Congenital CMV

· Protect Your Baby from Cytomegalovirus (CMV) (Publication #20172) (PDF)

Author of Had I Known about CMV: From Shock to Law; Advisory Board (as Parent Advocate) for PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV; NY DeafBlind Collaborative Expert Advisory Council; and CMV Policy Coalition (National CMV Foundation). CMV content: flier, "CMV in New York (and OSHA," and Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew."

###

DEAR CONGRESS MEMBERS

We were the parents of Elizabeth (see attached images), born with brain damage from congenital CMV. When I was pregnant with Elizabeth, I was unaware of CMV and how to prevent it – namely by carefully handling the saliva and urine of toddlers who, though otherwise healthy, may be excreting the virus in their bodily fluids.

I'm asking that Congress members to co-sponsor the Stop CMV Act of 2025 (H.R.5435/S.2842). “To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.” Introduced by Sen. Richard Blumenthal [D-CT] and Rep. Michael Lawler [R-NY]. According to the National CMV Foundation, The legislation proposes the following:
Provide funding for hospitals and healthcare providers to test newborns for cCMV
Support state agencies in setting clear standards for newborn testing
Create grants to expand cCMV testing, strengthen data collection, and provide education and training
Boost research at the National Institutes of Health for better screening, prevention, vaccines and treatment
Without universal CMV screening, the diagnosis of congenital CMV “may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006).
Kara Russell of Penfield, NY, said, “My daughter, Lyla, is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life.” Lyla, born in 2018, "passed her newborn hearing screen, so she was never tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check that we learned she had profound unilateral hearing loss -- that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately.” Kara is the New York National CMV Alliance Co-Chair (nationalcmvnys@gmail.com).
According to the CDC, "Hearing loss can affect a child's ability to develop communication, language and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential."
Kristin Schuster of Canandaigua, NY, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive antiviral treatment most effective when given between ages zero to six months.” Kristin is referring to “antiviral therapy with a 6-month course of valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants with confirmed cCMV" (Schleiss).
MN and CT already have universal congenital CMV screening laws. New York State tested all newborns for congenital CMV during the 2023-2024 pilot study. Speaking of the pilot study results, Andrew Handel, MD, a Pediatric Infectious Disease physician at Stony Brook Children's Hospital, said, “We've seen cases of missed clinically apparent cCMV during the NYS universal screening program. There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive.” The Dept. of Health created the flier, Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)
Organizations Supporting Universal CMV Screening, with their detailed position statements, include:
American Academy of Audiology
American Academy of Otolaryngology-Head and Neck Surgery:
National CMV Foundation
I am happy to provide you with more information.
Sincerely,

Lisa Saunders
Author of Had I Known about CMV: From Shock to Law; Advisory Board (as Parent Advocate) for PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV; NY DeafBlind Collaborative Expert Advisory Council; and CMV Policy Coalition (National CMV Foundation). CMV content: flier, "CMV in New York (and OSHA," and Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew."

NOTE:
Some friends have asked me how to get a law passed about their particular cause, so I created the PowerPoint, "How to Get a Law Passed – even if you're not thin and famous!" You are welcome to click through the slides in case you find it helpful. I have also called and/or written by legislators about the following topics in case you are looking for a cause to tackle:
Jesus, Hanukkah, and proposed national and NY legislation to combat antisemitism
A parent’s “coercive control” in child custody cases: Could Ava's death have been prevented?
Legislators: Reduce Fetal Pain During Procedures (abortion)
Legislators in 2026: Support two NY CMV bills PLUS national Stop CMV Act

Holidays and loss because of congenital cytomegalovirus (CMV): Ways to fight the pain through legislation

2025-12-05T05:13:00.000-08:00

The Empty Christmas Chair

Holidays without our daughter

by Lisa Saunders

Like many who have lost a loved one, I tear up this time of year when I hear Bing Crosby sing “I'll Be Home for Christmas" on the car radio. I cry for my daughter, Elizabeth, born December 18, 1989.

Expecting Elizabeth, due to be born on Christmas Eve of that year, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”

The neonatologist said, "Your daughter's brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.

Why hadn’t my OB/GYN warned me about this? While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.

It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. We were eventually able to move forward as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone.

While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

As I prepare to celebrate yet another Christmas without her, it is always with some heartache that I bring out the holiday decorations from storage. Elizabeth used to love to sit on the couch with her big, once homeless old dog, Riley, and watch us decorate. (Their story is told in my memoir, Had I known about CMV: From Shock to Law).

Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. When my time comes, I will see her again. My father wrote a fairytale that I found very helpful after Elizabeth died. Folks can read it as a blog post or as a booklet, Surviving Loss: The Woodcutter's Tale. It includes comments on grieving from Julie Russell, a licensed clinical social worker, plus heart-felt illustrations by Elizabeth's aunt, Marianne Greiner. If you lost a child to congenital CMV, I suggest you cry along with me to this heart-gripping song, "Had I Known (about CMV)" © 2018 DebraSong Publishing, Debra Lynn Alt, www.debrasong.com, (Her email,:debrasong@gmail.com).

The Only Thing I Can Do for Elizabeth Now

LEGISLATION

Promoting recent and proposed legislation should improve parent, health care provider, and educator knowledge. And as a result, better prevention and support for children and their families.

Proposed National legislation: 119th Congress (2025-2026). Stop CMV Act 2025.

Introduced by: Sen. Richard Blumenthal [D-CT] and Rep. Michael Lawler [R-NY] “To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.”

As it happens, Rep. Mike Lawler was a high school classmate of my older daughter and attended Elizabeth's funeral when he was in college (Elizabeth died Feb 9, 2006)According to "New Bill: Representative Michael Lawler introduces H.R. 5435: Stop CMV Act of 2025" (Quiver LegislationRadar), "The bill mandates that hospitals or health care entities caring for infants up to 21 days old conduct tests for congenital CMV. This is designed to identify CMV in newborns, which can lead to serious health issues if not detected early."

Contact your House/Senate representatives (members of Congress) and ask them to cosponsor the bill and join forces with the National CMV Foundation to "Support the Stop CMV Act."

I currently live in upstate New York, so I am also advocating for the following New York State legislation:

Assembly Bill A3956/S5454: "Requires cytomegalovirus screening for every newborn..."
Assembly Bill A3074/S7662: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST...BEFORE...FOUR WEEKS …EXAMINATION SHALL INCLUDE…EYE EXAM BY AN OPHTHALMOLOGIST; AND HEARING...”

The following New York Laws are already in place:

2022: “Elizabeth’s Law” (A7560), named in memory of my daughter. “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding...congenital cytomegalovirus infection."

2018: Targeted CMV testing law (A587C/S2816) “Requires urine polymerase chain reaction testing for cytomegalovirus of newborns with hearing impairments”.

Legislators, Please cosponsor cytomegalovirus (CMV) bills, A3956 and A3074

2025-05-12T03:29:00.000-07:00

Dear New York CMV Awareness Advocates:

1) Please contact your Assemblyman and NY Senator (visit this link to find them) and ask them to pass and possibly cosponsor CMV bills A3956 and A3074. These bills are still sitting in the health committee (committees will meet again in Jan. 2026).

In summary:

a. Assembly Bill A3956: "Requires cytomegalovirus screening for every newborn..."
b. Assembly Bill A3074: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST...BEFORE...FOUR WEEKS...EXAMINATION SHALL INCLUDE...EYE EXAM BY AN OPHTHALMOLOGIST; AND HEARING...”

To learn more about the bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov.

To see my letter of support, which answers some of the questions posed to me when I visited some health committee members in Albany, click here: Lisa Saunders New York Letter of Support for CMV bills, A3956 and A3074. My senator, Rachel May, became a sponsor of one of the bills, and my assemblyman, William Magnerelli, mailed me a letter stating, "Should A.3956 or A.3074 reach the Assembly floor for a vote next year, I will be in favor of their passing."

I wrote to my legislators:

Please cosponsor Assembly Bill A3956 and Assembly Bill A3074:

Thank you again for cosponsoring Assembly Bill A7560B, named "Elizabeth's Law" in memory of my daughter, which passed in 2022. It requires providing congenital cytomegalovirus (CMV) educational materials to pregnant women and childcare providers. As you may recall, I was the mother of Elizabeth (see attached) born with brain damage from congenital CMV. When pregnant, I was unaware of CMV and how to prevent it – namely by carefully handling the saliva and urine of toddlers who, though otherwise healthy, may be excreting the virus in their bodily fluids.

The American College of Obstetricians and Gynecologists states: “CMV can be passed from a pregnant person to their fetus. About one in 200 infants are born with a congenital CMV infection; of those, about one in five will have birth defects or other long-term health problems” (ACOG, 2024). Congenital CMV can cause autism (AAP News), is the #1 viral cause of birth defects, and is the leading non-heredity cause of hearing loss (CDC). CMV transmission between children is common in childcare centers. Individuals who work in childcare have an occupational risk for CMV (OSHA). “Knowledge and awareness of congenital cytomegalovirus among women is low [22%]” (Jeon et al., 2006).

In 2018, New York passed S2816, which requires testing newborns who fail their hearing screen for CMV, but it’s important to diagnose all cases at birth because cases are missed. "Babies with CMV who are caught early can access early treatment – which includes anything from anti-viral medication, to early intervention services, to long term hearing and vision monitoring. Since 90% of symptomatic babies are missed at birth, universal screening would help identify both symptomatic babies who may benefit from medication, and also asymptomatic babies who are at higher risk of hearing loss in childhood"--Dr. Megan Pesch, National CMV Foundation (2021). MN and CT have universal screening laws.

In 2025, New York Assemblymember Linda B. Rosenthal filed two CMV bills (contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov):

1. Assembly Bill A3956: "Requires cytomegalovirus screening for every newborn..."

2. Assembly Bill A3074: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST...BEFORE...FOUR WEEKS …EXAMINATION SHALL INCLUDE…EYE EXAM BY AN OPHTHALMOLOGIST; AND HEARING...”

In April 2025, I met with some Health Committee members in Albany to educate them on the importance of diagnosing congenital CMV at birth because a newborn may pass their hearing test, but then experience a progressive hearing loss. "Hearing loss can affect a child’s ability to develop speech, language, and social skills. The earlier that children with hearing loss start getting services, the more likely they are to reach their full potential" (CDC). Without universal CMV screening, diagnosing congenital CMV “may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006). Health committee members wanted the following information:

1) Antiviral treatment: “valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants" (Schleiss, M., The Journal of Pediatrics, 2024).

2) Savings: "savings of up to $37.97 per newborn screened were estimated" when all newborns are tested for congenital CMV” (Gantt, et al., JAMA Pediatrics, 2016). The report, “AN ACT RELATIVE TO NEWBORN SCREENING FOR CONGENITAL CYTOMEGALOVIRUS” (by BerryDunn for MA’s CMV bill), analyzes costs.

3) Racial Disparities: Congenital CMV “is 3 times more prevalent in black infants” (Moderna, Inc). See short video, “Racial Disparities in Babies with cCMV” (Massachusetts CCMV Coalition).

4) Congenital Cytomegalovirus (cCMV) Infection pilot study: Of the 210,100 babies born in NYS between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," said Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV. “We've seen cases of missed clinically apparent cCMV during the NYS universal screening program. There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive.”

Organizations Supporting Universal CMV Screening:

American Academy of Otolaryngology-Head and Neck Surgery:
Strongly endorses universal newborn cCMV screening, stating it's necessary to best achieve the goals of early diagnosis and intervention.
National CMV Foundation:
Advocates for universal newborn CMV screening and has been actively lobbying for it at the state and federal level.
American Academy of Audiology:
Recommends early identification of cCMV through screening to allow for early diagnosis, intervention, and monitoring.

In 2022, New York State passed “Elizabeth’s Law” (A7560), named in memory of my daughter. It “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding...congenital cytomegalovirus infection." The NYS Dept. of Health created the following informational materials:

· Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)

· For Child Care Providers: Dear Provider Letter and Child Care Staff and Cytomegalovirus (CMV) #5061

In 2025, the New York State Assembly passed a resolution declaring June 2025 CMV Awareness Month: https://nyassembly.gov/leg/?default_fld=&leg_video=&bn=K00668&term=2025&Summary=Y&Actions=Y&Memo=Y&Text=Y

Examples of New York families who would have benefited from universal congenital CMV testing:

Kristin Schuster of Canandaigua, mom to Autumn born in 2015 (Autumn failed her hearing screen, but this was before the 2018 targeted CMV testing law Assemblymember Rosenthal got passed), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive treatment most effective when given between ages zero to six months."
Kara Russell of Penfield: "Lyla, my youngest child, was born in 2018 and passed her newborn hearing screen, so she was never tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check in summer of 2023 that we learned she had profound unilateral hearing loss - that she was completely deaf in her left ear. We have no idea how long she was unable to hear accurately, even though she was receiving speech services since age four and had some coordination delays. According to the CDC, "Hearing loss can affect a child's ability to develop communication, language and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential." Lyla's pediatrician referred us to a pediatric audiologist who, after confirming the hearing loss, referred us to an ENT. In January 2024, the ENT said she wanted to test Lyla's newborn bloodspot for Congenital CMV. This was possible because of the pilot study that NYS was conducting at the time for CMV. She explained that I may have contracted CMV while pregnant, passing it to my unborn child. The test came back positive. I was told that Lyla might lose hearing in her other ear and that she would need to have her hearing tested every three months indefinitely because hearing loss from congenital CMV can be progressive. To say I was dumbfounded is an understatement. I had never heard of CMV despite having two older children and numerous prenatal visits. I was angry to learn that something I never knew existed can cause permanent disabilities and that I might have been able to prevent it if I had known the precautions to take. Since receiving her diagnosis, she has undergone surgery for a Cochlear Implant and we continue to monitor her hearing. This has greatly impacted her learning and she works hard every day to overcome all her delays and challenges. My goal is for every newborn to be screened for Congenital CMV. No mother should find out 5 years after the birth of her child, that they have.” Kara Russell is the New York National CMV Alliance Co-Chair. Contact: nationalcmvnys@gmail.com

For more information about the CMV bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov. Thank you in advance for your help!

Sincerely,

Lisa Saunders, LisaSaunders42@gmail.com

Lisa Saunders is the author of Had I Known about CMV: From Shock to Law. She is on the Advisory Board (as Parent Advocate) for PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV, and on the NY DeafBlind Collaborative Expert Advisory Council. She produces CMV awareness content such as the flier, "CMV in New York (and OSHA)" and the Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew.” She is the recipient of the National CMV Foundation Spirit of Advocacy Award (2023).

*Studies on Racial and Ethnic Differences:

1) Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection (Fowler et. al, 2018); “Significant racial and ethnic differences exist in the prevalence of cCMV, even after adjusting for socioeconomic status and maternal age. Although once infected, the newborn disease and rates of hearing loss in infants are similar with respect to race and ethnicity.”

2) Geographic Disparities in Cytomegalovirus Infection During Pregnancy (Lantos et. al, 2017). “We found a high prevalence of CMV seropositivity in urban low-income neighborhoods among pregnant women, particularly among racial and ethnic minorities.”

3) Updated National and State-Specific Prevalence of Congenital Cytomegalovirus Infection, United States, 2018-2022 (Lutz et al., 2024). It looks at congenital CMV (cCMV) rates by racial/ethnic group and geography and includes some colorful US maps that drive home the disparities. It concludes: “States with larger proportions of racial and ethnic minorities had higher estimated prevalence of cCMV infection compared to states with larger proportions of White persons.”

Regarding child care providers

I have concerns about child care policy makers and directors not realizing that their workers who are required to provide first aid are supposed to be trained in CMV -- not just receive educational materials on it. From OSHA: “Child care workers who are designated as responsible for rendering first aid” (published "Letter of Interpretation," 1992) are covered by OSHA’s Bloodborne Pathogens Standard, which “imposes requirements on employers of workers who may be exposed to blood or other potentially infectious materials such as certain tissues and body fluids.” Two published Letters of Interpretation make it clear that childcare providers, if required to render first aid, are covered by the Bloodborne Pathogens Standard:

https://www.osha.gov/laws-regs/standardinterpretations/1992-07-21
https://www.osha.gov/laws-regs/standardinterpretations/1999-10-21

Ask your NY Legislators to cosponsor 2025 CMV bills A3956 and A3074 and ensure A7560 ("Elizabeth's Law), a CMV education bill signed by the governor, is being implemented

2025-02-24T05:11:00.000-08:00

For more information about the two bills I mention below, and the one already signed by the governor that I don't think is being implemented, please contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov

We Need Your Help!

We want to ensure that many New York State Senators and Assembly Members sign on to these bills as co-sponsors to demonstrate widespread support.

Please call or email (best to do both to ensure they read your email) your State Senator and State Assemblymember TODAY!

You can find out who your New York State Senate and State Assembly Member are by clicking on:
- Find Your State Senator
- Find Your State Assembly Member

Draft two separate emails, one to your NY Senator and the other to your NY Assemblymember

Please feel free to draft your own email or use parts of my email below.

EMAIL SUBJECT:

TO [SENATOR OR Assembly Member] - REQUESTING CO-SPONSORSHIP of Congenital Cytomegalovirus (CMV) Bills A3956 and A3074

[see my email below for a sample]

Calling your State Senator and State Representative:.

Call both your State Senator and State Assemblymember. If your call goes to voicemail, just state what you want. They do seem to listen to messages.
What to say:

Introduce yourself and why you’re calling: “Hi, my name is ___. As your constituent living at [your address], I am asking you to cosponsor CMV bills A3956 and A3074 filed by Assemblymember Linda B. Rosenthal.

Key talking points you may want to include:

This legislation would require mandating universal congenital CMV screening for all newborns to allow for timely diagnosis and interventions.
Congenital CMV is one of the most common congenital diseases in infants in the United States and the leading viral cause of birth defects and developmental disabilities.
91% of women do not know about the disease or prevention during pregnancy.
Then, if possible, share why this issue is important to you personally and the impact cCMV has had on your life or the life of a loved one. These stories are often the best way to connect with legislators!

Thank them for their time. If they have any questions, and you are unsure of the answer, simply say you do not know but will call them back. Or, have them contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov

Below is the information I gave my NY Senator on Feb 22, 2025, and below that, some additional information:

Please sponsor 2025 cytomegalovirus (CMV) bills A3956 and A3074; and ensure implementation of A7560 (passed in 2022, but no evidence of compliance).

Congenital CMV can cause autism and is the leading non-heredity cause of hearing loss

Dear Senator Rachel May:

My name is Lisa Saunders, I live in your district, and I would like you to sponsor two bills that relate to congenital cytomegalovirus (CMV), a leading cause of birth defects.

Congenital CMV causes more disabilities than “Down Syndrome, Fetal Alcohol Syndrome, Pediatric HIV/AIDS, Spina Bifida, Toxoplasmosis, and Zika” – National CMV Foundation.

In 1990, the Infectious Diseases Society of America and Centers for Disease Control held a workshop and “agreed that certain child-rearing practices, such as the common use of day-care centers...have changed the epidemiology of CMV in the United States and that the next decade may bring an increase in congenital CMV disease in certain groups" (National Library of Medicine, Demmler, 1991).

Assembly Bill A3956: "Requires cytomegalovirus screening for every newborn..." (see below my signature for reasons why diagnosing congenital CMV at birth is important).
Assembly Bill A3074: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST TO PERFORM A FULL EXAMINATION BEFORE SUCH NEWBORN REACHES FOUR WEEKS…SUCH EXAMINATION SHALL INCLUDE…

MEASUREMENT OF HEAD CIRCUMFERENCE;
HEAD SONOGRAM;
BLOOD TESTS INCLUDING A COMPLETE BLOOD COUNT AND LIVER FUNCTION TESTS;
EYE EXAM BY AN OPHTHALMOLOGIST; AND
HEARING EVALUATION BY AUDITORY BRAINSTEM RESPONSE.

The importance of diagnosing congenital CMV at birth: “We've seen cases of missed clinically apparent cCMV during the NYS universal screening program. There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive,” said Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS.

Resources:

CDC and congenital CMV

National CMV Foundation flyer, "Are you pregnant."

Sincerely,

Lisa Saunders, author of "Had I Known about CMV: From Shock to Law.

ADDITIONAL INFORMATION

The importance of diagnosing congenital CMV at birth includes:

"Babies with CMV who are caught early can access early treatment – which includes anything from anti-viral medication, to early intervention services, to long term hearing and vision monitoring. Since 90% of symptomatic babies are missed at birth, universal screening would help identify both symptomatic babies who may benefit from medication, and also asymptomatic babies who are at higher risk of hearing loss in childhood" (Dr. Megan Pesch, Recommended Uniform (Newborn) Screening Panel (RUSP) Update, National CMV Foundation, 2021).
"...there is good evidence of potential benefit from nonpharmaceutical interventions for children with delayed hearing loss that occurs by 9 months of age. Similarly…there is fair evidence of potential benefit from antiviral therapy for children with hearing loss at birth and from nonpharmaceutical interventions for children with delayed hearing loss occurring between 9 and 24 months of age and for children with CMV-related cognitive deficits...in the United States, several thousand children with congenital CMV could benefit each year from newborn CMV screening, early detection, and interventions" ("Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?", Cannon et al., 2014).

“The risk of late-onset hearing loss and progressive hearing loss in cCMV-infected infants requires increased surveillance…should include serial evaluations with a pediatric audiologist through 6 years of age and continued audiologic follow-up through the teenage years” (“American Cochlear Implant Alliance Position Statement on Newborn Congenital Cytomegalovirus Screening,”2024).
“One-third of patients with congenital CMV had ocular findings in conjunction with systemic manifestations….While initial screening for retinitis is important, patients with systemic sequelae of congenital CMV are at risk for other eye manifestations and require continued follow-up.” (Incidence of ophthalmic manifestations in congenital cytomegalovirus (CMV), Rossen, et al., BMC, 2025).

Previous New York CMV bills and Pilot Study

2018: New York passed S2816, which requires testing newborns who fail their hearing screen for CMV.

2022: New York State passed “Elizabeth’s Law” (S6287C/A7560), named in memory of my daughter. It “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.”

2023: Pilot Study - New York State Department of Health announced that effective October 2023, all babies will be offered screening for congenital CMV, making New York the second state in the nation, after
Minnesota, to screen all babies for the virus. (Long-Term Follow-Up study: proactivenys.org. Contact: Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University, andrew.handel@stonybrookmedicine.edu.)

2024: Results of NY’s CMV-Testing Pilot Study: Of the 210,100 babies born in New York between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," according to Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS.

2025: Assembly Bills A3956 and A3074 were filed and I would like to see my representatives sponsor them.

Reporter Robert Harding of the Auburn Citizen (and others) covered legislative work on CMV (and/or my efforts to raise awareness), and is interested in continuing to do so. News items about my work on CMV in New York include:

Eagle Newsroom: “This CMV Awareness Month, mother continues to share her story” (Edwards, A., June 19, 2024).
CNY Central: Baldwinsville mother applauds federal push to protect babies from CMV - CNY Central (Coleman, M.,March 8,2024).
The Citizen: “Bill in Congress aims to boost CMV newborn screening, research” (Robert Harding, Mar 8, 2024).
NBC3: Baldwinsville couple's advocacy inspires legislation for CMV awareness (Coleman, M., Nov. 30, 2023).
Eagle Newsroom: “Baldwinsville couple walking Erie Canal, raising awareness,”(Baldwinsville Messenger, print, Davis, J., Oct. 25, 2023).
Democrat and Chronicle and Lohud,: “New York begins screening newborns for CMV virus that causes birth defects. What to know” (Robinson, D., Oct. 4, 2023)
USA TODAY: This virus is a leading cause birth defects. Why isn't it screened more? (Eduardo Cuevas, 2023, print).
The Citizen: “NY to begin pilot CMV newborn screening program” (Harding, R. Sept. 28, 2023).
NYSenate.gov:“Senator Mannion and Assemblymember Rosenthal Announce Addition of Congenital Cytomegalovirus (CMV) to State's Routine,” Sept. 29, 2023.
The Post-Standard: "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", Emma Vallelunga, Jan.1, 2023, Syracuse.com, Dec. 27, 2022 (Facebook).
CNYCentral.com:”Baldwinsville mom celebrates new law in daughter's name to protect pregnant women, babies,” Coleman, M., Dec.15, 2022 (Facebook).
New York Family: “Elizabeth’s Law for CMV Education Passed in New York”, Kaitlyn Riggio, Dec. 8, 2022.
U.S. News & World Report: "Editorial Roundup: New York", Associated Press, Dec. 7, 2022 (scroll down to: Auburn Citizen, December 1, 2022.Editorial: Elizabeth’s Law poised to help families avoid heartbreak).
The Citizen: “Our View: Elizabeth’s Law poised to help families avoid heartache,”The Citizen Editorial Board, Dec. 1, 2022
The Citizen: "Hochul signs 'Elizabeth's Law,' named for Auburn native's daughter, to raise CMV awareness", Robert Harding, Nov. 29, 2022.
NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.
The Citizen: "NY lawmakers OK CMV awareness bill named in honor of CNY couple's daughter", Robert Harding, June 1, 2022.
Eagle Newsroom, "Baldwinsville couple advocates for 'Elizabeth's Law' to stop cytomegalovirus: Bill named in memory of their daughter," Dec. 14, 2021.
Spectrum News: "Couple pushes for law in memory of their daughter" (Houghtaling, J., Jul. 01, 2021). Includes an interview with Dr. Sunil Sood.
Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York" (Buchiere, S., Jun 11, 2021).
Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", (Buchiere, S.,June 4, 2021).
The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", (Harding, R., June 2, 2021).
Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", (Vallelunga, E., May 2021)
The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", (Wilcox, D., Mar 31, 2021)
Times Herald Record: “What every pregnant woman needs to know” (Botti, D., 2009)

Other countries and CMV:

Australia educates childcare workers about CMV (see "Cytomegalovirus (CMV) in early childhood education and care services"). The following is a published account of what happened when a child care provider was not educated about her risk for CMV: In New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's services 2002)” (Queensland Government, Australia, retrieved from: https://www.worksafe.qld.gov.au/safety-and-prevention/hazards/hazardous-exposures/biological-hazards/cytomegalovirus-cmv-in-early-childhood-education-and-care-services). Meridian Lawyers of Australia stated: "The allegations of negligence were that Sydney Day Nursery breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women..." Retrieved from: https://www.meridianlawyers.com.au/insights/infectious-diseases-child-care-what-about-staff-members/

Underdiagnosed cause of autism: Maternal infection, cytomegalovirus (CMV), #1 birth defects virus

2025-02-16T11:13:00.000-08:00

Lisa Saunders with her daughter Elizabeth, born with a severely damaged brain from congenital CMV, in 1989. Elizabeth died during a seizure at the age of 16 in 2006.

"Children with congenital cytomegalovirus (cCMV) infection are about 2.5 times more likely to be diagnosed with autism spectrum disorder (ASD) than their peers..." (AAP News, 2024).

Public health campaign needed so women of childbearing age can make decisions

to protect their pregnancies.

by Lisa Saunders

Women of childbearing age need to learn that the common virus, congenital CMV (cytomegalovirus), has recently been proven to be a cause of autism. The research of Megan Pesch, M.D., shows that "Children with congenital cytomegalovirus (cCMV) infection are about 2.5 times more likely to be diagnosed with autism spectrum disorder (ASD) than their peers" (AAP News, 2024). She is the lead on the study, “Autism Spectrum Disorder Diagnoses and Congenital Cytomegalovirus” (Pesch MH, et al. Pediatrics. May 29, 2024).

Megan Pesch, M.D., is a developmental behavioral pediatrician at University of Michigan Health C.S. Mott Children’s Hospital and her "daughter has both diagnoses [congenital CMV and autism]" (Uncovering the link between a common congenital viral infection and autism," Michigan Medicine, 2024).

Dr. Pesch told me, "I’d be happy to chat with anyone about the work, which probably just represents the tip of the iceberg. I am the proud mom of an autistic daughter, and while I adore who she is, it has also been powerful to know the root of her autism (CMV)."

Like Dr. Pesch, I, too, gave birth to a daughter with congenital CMV. And, both she and I should have known about CMV, its impact and how to prevent it because she was a medical doctor at the time of her pregnancy, and I was a licensed "in-home" child care provider, who, according to OSHA, should have been educated about my occupational hazard for CMV in my required training to become and stay licensed. According to OSHA, CMV is a "Recognized Hazard" and that all workers have the right to “receive information and training on job hazards, including all hazardous substances in your workplace.” (OSHA mandates that employees who render first aid must be trained in CMV because the virus, although usually spread through saliva and urine, is also a bloodborne pathogen. To "meet" some of us who worked as caregivers/teachers during our pregnancy, watch our CMV awareness event while listening to the song, "Had I Known [about CMV" Lyrics and Music by Debra Lynn Alt,"2021.)

Most women are not told about CMV at their first prenatal visit. Dr. Pesch is quoted in the Washington Post (2021) as saying that CMV education is not "part of standard prenatal care” and that medical training downplays the dangers of CMV.

Other reasons OB/GYNs don't routinely inform their patients about CMV:

They don’t want to frighten, worry or “burden” patients (New York Times, 2016).
CMV is a “silent virus”--"Infection is usually asymptomatic…and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).

Robert F. Kennedy, Jr., founder of Children’s Health Defense, said at his swearing in as Secretary of Health and Human Services: "millions of mothers...simply want the tools – and the truth – so they can make informed decisions for their children" (HHS, 2025). Since he says he wants to learn the causes of autism, I hope he, and others who seek to protect children from preventable diseases, will learn about CMV. Mothers need to know about CMV before they get pregnant "so they can make informed decisions for their children." (The Children's Health Defense article, "The Special Ed Epidemic: Minimizing Risks — Protecting Our Children" mentions CMV as a cause of lower birth rate, which can lead to disabilities, but more information is needed on CMV, the #1 birth defects virus, so women can "make informed decisions for their children." )

For example, when the Infectious Diseases Society of America and Centers for Disease Control held a workshop in 1990, it was “agreed that certain child-rearing practices, such as the common use of day-care centers ...have changed the epidemiology of CMV in the United States and that the next decade may bring an increase in congenital CMV disease in certain groups" (Demmler, 1991).

Because CMV is often found in group child care centers where toddlers easily spread the virus to each other through their bodily fluids, the mothers of these toddlers are at greatest risk for contracting CMV: “Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare” (Dr. Jason Brophy in Ottawa Citizen, 2018).

The Problem: “Despite CMV being the leading cause of birth defects and developmental delays in the United States (surpassing Down syndrome and neural tube defects), relatively few women in the US know about CMV and how it can affect pregnancy” (Contemporary OB/GYN, 2024).

The Solution: I believe there needs to be a public health campaign to teach how to avoid ingesting toddler saliva so that CMV prevention becomes common knowledge, like the "don't change kitty litter" rule aimed at preventing congenital toxoplasmosis. Unfortunately, women rely on easy-to-grab diaper wipes to clean off saliva and urine, but soap and water or hand sanitizer are needed to kill the CMV virus.

Since nearly half of pregnancies are unplanned, women need to know that they should not be sharing drinks with their toddlers or kissing them around the mouth, especially those in group care. "Improving preconception health and pregnancy outcomes will require...Changes in the knowledge and attitudes and behaviors related to reproductive health among both men and women ..." (Recommendations to Improve Preconception Health and Health Care, CDC). Other prenatal infections that can affect pregnancies can also be included in an awareness campaign geared to women of childbearing age.

Recommended resources include:

CDC and congenital CMV
National CMV Foundation flyer, "Are you pregnant."

CMV-educated women can better protect their pregnancies by making the following decisions regarding her toddler:

1) Should the mother:

A) Continue to share food and drinks with her toddler, kiss them on the lips, and wipe away saliva and urine with handy diaper wipes,

or, should the mother:

B) Get a new cup every time her toddler takes a sip from hers, kiss them on the check instead of the mouth, and use soap and water to wipe off saliva and urine instead of relying on ineffective diaper wipes to reduce her chances of contracting CMV.

2) Should the mother:

A) Enroll her toddler in group care for socialization, but risk her toddler bringing CMV into the home (yet this less worrisome if the mom follows infection control at home and/or if mom knows that she has antibodies to CMV);

or, should the mother:

B) Hire a nanny to lessen the risk of bringing CMV into the home.

If I had known about CMV before getting pregnant with my daughter, I would have:

Gotten tested to see if I had any antibodies to CMV prior to getting pregnant.
Gotten tested after suffering a miscarriage to see if CMV was the cause. If positive, I would have waited to get pregnant again.
If blood work showed I had no antibodies for CMV, I would not have professionally cared for young children in my home nor volunteered in our church nursery. I would have only worked with older children.
Regardless of CMV antibody status, I would never have shared food and cups with my toddler, nor let her kiss me on the lips.

Thank you in advance for informing women of childbearing age about CMV so they can make "informed decisions for their children."

Sincerely,

Lisa Saunders, author of memoir, "Had I Known about CMV: From Shock to Law."

Lisa is on the Advisory Board (as Parent Advocate) for PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV, and on the NY DeafBlind Collaborative Expert Advisory Council. She produces CMV awareness content such as the flier, "CMV in New York (and OSHA)" and the Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew.” She is the recipient of the National CMV Foundation Spirit of Advocacy Award (2023). In 2015, Lisa helped get a CMV testing law in Connecticut, and in 2022, a CMV education law, Elizabeth's Law, named in memory of her daughter, passed in New York. Despite Elizabeth's Law passing at the end of 2022, however, Lisa says that she still doesn't see an improvement in CMV awareness or evidence of Elizabeth's Law being implemented. "Can anyone help ensure women of childbearing age learn about CMV before they get pregnant?"

(Photo caption: Mothers of children born with congenital CMV who worked in occupations that should have guaranteed they knew the dangers of contracting CMV when pregnant. (l to r): Megan Honor Pesch, MD, Pediatrician, University of Michigan’s C.S. Mott Children’s Hospital; Lisa Saunders, former licensed childcare provider; Kathleen M. Muldoon, PhD, Associate Professor of Anatomy at Midwestern University, Glendale, AZ; and Amanda Devereaux RN, BSN, Program Director of National CMV Foundation. They gathered at the National CMV Foundation booth at the Early Hearing Detection and Intervention (EHDI) Annual Meeting (Kansas City, Missouri, March 2020.)

MORE INFORMATION

"Up to 70% of children ages 1 to 3 years in group care settings excrete the virus.” On average, 30-40% of preschoolers in day care excrete CMV in their saliva and/or urine (American Academy of Pediatrics).
In 2016, in the U.S., “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases” (Thackeray and Magnusson, 2016).
Between Aug. 2020-Dec. 2021, cases of congenital CMV “decreased to one baby in every 1,000 births…the combination of strict hygienic precautions, stay-at-home practices and…the closure of…group day care centers all resulted in reduced transmission…” (University of Minnesota).

In 2024, the STOP CMV Act 2024 (H.R.7542/S.3864) was introduced in Congress by Congressman Mike Lawler (NY), an attendee at my daughter Elizabeth's funeral (she died of a seizure in 2006) and U.S. Senator Richard Blumenthal (CT). It never went beyond committee.

New York

In 2025, Assemblymember Linda B. Rosenthal (D/WF-Manhattan) filed bills to require CMV screening and reporting/evaluations for every newborn (A3956 and A3074 respectively). (In 2018, she got a targeted CMV testing bill passed, S2816, and in 2022, she got Elizabeth's Law, A7560B, passed.)

NY’s CMV Pilot Study:
In 2023, the Eunice Kennedy Shriver National Institute of Child Health and Human Development awarded the New York State Newborn Screening Program a contract "to provisionally add cCMV [congenital CMV] to its screening panel." The free testing was conducted during a baby's routine newborn screening. The goals of testing every newborn for cCMV for one year in New York were to learn:
Could universal cCMV screening be successful nationwide?
Could cCMV be detected by dried blood spot newborn screening? (It's more accurate, but more expensive, to detect it through saliva or urine.)
Is catching and diagnosing cCMV at birth helpful? (Newborn Screening for Congenital Cytomegalovirus: A 1 Year Pilot, Sarah Bradley, MS, CGC, 2023). (See results of NYS Pilot Study below my signature).
Results
Of the 210,100 babies born in New York between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," according to Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University. “There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive.” (Andrew Handel, MD, Stony Brook Children's Hospital, is Co-Primary Investigator of PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV. The study is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, a branch of the NIH.)

Racial Differences:

It's important to note that there are "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection" (Fowler, et al., 2018) and there are "Geographic Disparities in Cytomegalovirus Infection During Pregnancy" (Lantos, et. al., 2017). Congenital CMV “is 3 times more prevalent in black infants” according to Moderna, Inc. The Massachusetts CCMV Coalition posted the following video on Facebook: "Racial Disparities in Babies with cCMV.”

PUBLISHED CONGENITAL CMV COURT CASES

As an FYI, Australia educates childcare workers about CMV (see "Cytomegalovirus (CMV) in early childhood education and care services"). The following is a published account of what happened when a child care provider was not educated about her risk for CMV: In New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's services 2002)” (Queensland Government, Australia, retrieved from: https://www.worksafe.qld.gov.au/safety-and-prevention/hazards/hazardous-exposures/biological-hazards/cytomegalovirus-cmv-in-early-childhood-education-and-care-services). Meridian Lawyers of Australia stated: "The allegations of negligence were that Sydney Day Nursery breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women..." Retrieved from: https://www.meridianlawyers.com.au/insights/infectious-diseases-child-care-what-about-staff-members/

Connecticut: The following is a CMV case published in Connecticut: Article, "Couple wins $37.6 million in Superior Court ruling against UConn Health for fertility procedure that left one child dead and her twin requiring lifetime medical attention", includes the comment, “The Center for Advanced Reproductive Services did not inform Monroe-Lynch and 'knowledgeably obtain her consent' about the risks associated with a CMV infection, according to the lawsuit” (Hartford Courant, 2021). The lawyers' website states, “The devastating consequences of contracting congenital CMV infection early in pregnancy are well-known in the medical community. There are simple safeguards in place to protect prospective parents and their children from this horrible disease” (Walsh Woodard LLC, 2021). The lawyers calculated the costs of raising and burying a child because of cCMV in the Connecticut case : http://civilinquiry.jud.ct.gov/DocumentInquiry/DocumentInquiry.aspx?DocumentNo=20972296

Another Congressman cosponsors Stop CMV Act of 2024 (HR7542)

2024-09-13T04:56:00.000-07:00

I want to thank Congressman Brandon Williams for becoming a cosponsor of the Stop CMV Act of 2024 (HR7542), bipartisan legislation that will authorize new funding to incentivize hospitals and other health care entities to increase screening of newborns for congenital cytomegalovirus (CMV). According to the Centers for Disease Control, about one in five infants with congenital CMV will have birth defects or long-term health issues, such as hearing or vision loss, seizures, or developmental and motor delay.

In a press release, Congressman Williams stated: "Nearly 90% of infants born with congenital CMV appear perfectly healthy at birth, and it can take more than two years for associated health problems to become visible. This underscores the importance of early screening, both to come alongside caregivers who want what’s best for their children, and to contribute to ongoing research efforts that will help us better understand this disease as we seek to treat it” (Rep. Williams Announces Cosponsorship of Stop CMV Act of 2024, September 12, 2024).

In 2022, New York passed "Elizabeth's Law," named in memory of our daughter. Elizabeth was born with a severely damaged brain from congenital CMV in 1989 and died at 16 during a seizure. Elizabeth's Law (S6287C), sponsored by Senator John Mannion, “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.”

Ever since our daughter's death in 2016, I've focused my energies on trying to improve CMV prevention. " At least one-third of the pregnant women in the US are high risk; that is, they have daily household or occupational contact with children less than 3 years old" (Adler, 2011). Unbeknownst to me, I was at high risk for CMV when pregnant because I was an "in-home" licensed child care provider, a church nursery volunteer, and the mother of a toddler.

My husband Jim and I are currently walking across New York State between Buffalo and Albany on the Erie Canalway Trail leaving behind "Stop CMV" rocks with prevention information on the back as a way to raise awareness and to honor the memory of children who have died from congenital CMV.

To learn more about CMV laws and protocols in New York and beyond, click on this flier I created: CMV - New York Laws and OSHA

Sincerely,

Lisa Saunders

Author, Had I Known about CMV: From Shock to Law
New York DeafBlind Collaborative Expert Advisory Council member
Advisory Board as a Parent Advocate for PROACTIVE NYS, an NIH-funded long-term follow-up study of young children with congenital CMV

CMV: OSHA says caregivers who render first aid must be trained in CMV

2024-08-25T05:21:00.000-07:00

Dear CMV Advocates:

I have some good news that should affect every state in the United States because it helps raise awareness of CMV through child care centers, which in turn should raise awareness among the pregnant moms who use them: “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases” (Thackeray and Magnusson, 2016).

According to OSHA , any child care provider who is required to render first aid as part of their job must be educated on CMV through the "bloodborne pathogen" training required through their employers! Although most CMV is transmitted through saliva and urine, because it is also a bloodborne pathogen, then training is required, which also includes the proper handling of other bodily fluids.

For example, nurses do not contract CMV more than the regular population, and that is because they receive bloodborne pathogen training (even though they may not have heard of CMV, they are taught how to handle blood and all the bodily fluids).

"The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices. In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection" (https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm).

"The slow rate of acquisition of CMV in susceptible adults suggests that transmission requires prolonged, intimate contact. Nurses and nursing students who practice good personal hygiene are no more likely to acquire CMV than their peers in the community" (https://jamanetwork.com/journals/jama/article-abstract/362545).

The significance of having OSHA add CMV to the Bloodborne Pathogen Standard:

Standard requires annual training
Workers must be trained on CMV – they are guaranteed to hear about it
Standard requires employers to evaluate routes of exposure and provide hazard reduction methods'.

If you want to make sure your state is training caregivers/teachers, the following is an email I just sent to New York's Office of Children and Families:

Dear Office of Children and Families:

I wanted to make sure you are aware that OSHA says that any child care provider who is required to render first aid as part of their job duties must be educated about cytomegalovirus (CMV) through the "bloodborne pathogen" training required from employers.

While OSHA’s current Bloodborne Pathogens page (https://www.osha.gov/bloodborne-pathogens) does not emphasize the inclusion of CMV under the Bloodborne Pathogens Standard, it is considered a bloodborne pathogen. As you may recall, in 2019, OSHA recognized CMV as a hazard: “Workers in childcare and some healthcare jobs have frequent potential exposure to people—usually children—infected with CMV. The virus spreads through contact with body fluids, including saliva, nasal secretions, and excrement.“

Because CMV can also spread through blood, “Child care workers who are designated as responsible for rendering first aid” are covered by OSHA’s Bloodborne Pathogens Standard, the “regulation that prescribes safeguards to protect workers against health hazards related to bloodborne pathogens...imposes requirements on employers of workers who may be exposed to blood or other potentially infectious materials such as certain tissues and body fluids.”

More information on OSHA and CMV:

Cytomegalovirus: Hazard Recognition: https://www.osha.gov/cytomegalovirus/hazards

Bloodborne Pathogens and Needlestick Prevention: https://www.osha.gov/bloodborne-pathogens/standards

Regarding childcare providers and their coverage under the Bloodborne Pathogens Standard, two previously published "Letters of Interpretation" address this question and make clear that childcare providers, if they are required to render first aid, are covered by the Bloodborne Pathogens Standard. Read the following Letters of Interpretation for more information:

1) https://www.osha.gov/laws-regs/standardinterpretations/1992-07-21
2) https://www.osha.gov/laws-regs/standardinterpretations/1999-10-21

Thanks for all you do!

Lisa Saunders

P.S. If interested, here is my latest TV interview about raising awareness of CMV in New York: https://youtu.be/t-X5crq9Jjo?si=Ve7t4P-_VmUpUHYh

Telling a Mom Her Newborn May Have Hearing and/or Vision Loss

2024-07-25T04:36:00.000-07:00

(Image of me, Lisa Saunders, holding my daughter, Elizabeth, born with congenital cytomegalovirus.)

Telling a Mom Her Newborn May Have Hearing and/or Vision Loss

By Lisa Saunders

Part 1 – What is CMV, Learning the Diagnosis & Move Forward

The leading cause of hearing loss, after heredity, is congenital cytomegalovirus (CMV). Congenital CMV is also a cause of vision loss. The CDC states, “About 1 in 200 babies is born with congenital CMV infection. About 1 in 5 babies with congenital CMV infection will have birth defects or other long-term health problems.” In October 2023, New York State began testing every newborn for CMV for a one-year newborn screening pilot program. This means that mothers of newborns who tested positive for CMV, have the potential to hear that their child may develop hearing loss and/or vision loss as they age.

Presenting the possible outcomes of congenital CMV (or cCMV) to a mother is difficult news to deliver, and even harder for a mother to process. When my daughter Elizabeth was born in 1989 with obvious microcephaly (small, damaged brain), the following day I was told by a neonatologist that Elizabeth had tested positive for congenital CMV. I learned I had contracted CMV while pregnant, most likely from the toddlers who were under my care and passed it on to Elizabeth while she was developing in my womb. (If only I had known to reduce my chances of getting CMV by being more careful when handling the saliva and urine of young children.) The doctor said, “Of all the cases I've seen, Elizabeth's is the worst. She will never roll over, sit up, or feed herself. Her color is bad, her cry is strange, and she startles violently whenever people touch her. I don't know if she can see or hear.” That was 35 years ago, but I remember that conversation as if it were yesterday.

According to the article, “Improving the way healthcare professionals deliver different news to families during pregnancy or at birth: a qualitative study,” receiving news of a child’s learning disability “had a significant impact on parents’ emotional and mental wellbeing. They remembered how professionals described their child, the quality of care and emotional support they received. The process had a significant impact on the parent–child relationship and the relationship between the family and healthcare professionals.” Delivering this news is “challenging for some healthcare professionals due to lack of training” (Mugweni, et al, 2021).

The National CMV Foundation states, “Hearing problems occur in up to 75% of babies with symptomatic congenital CMV... the hearing loss will progress throughout the course of their lives.” In addition, “approximately 10-15% of asymptomatic babies may experience hearing loss, which can occur at birth or later in life.” Regarding vision, “Vision problems or loss may occur in 10-20% percent of children with symptomatic congenital CMV. The types of vision abnormalities are diverse and include scars on the retina and eye muscle tissues. Cortical vision impairment (CVI) or cortical blindness, where the brain improperly translates signals from an otherwise healthy eye, causing permanent visual deficiency, may also occur.” In addition, “Minor vision loss may occur in one to two percent (1-2%) of asymptomatic babies, usually caused by small scars or abnormal pigment layers on the retina that may be present at birth, or may occur later during childhood.”

Andrew Handel, MD, a Pediatric Infectious Disease physician at Stony Brook Children's Hospital, said, "Disclosing a new diagnosis of congenital CMV can be difficult in many ways. The conversation entails delivering some upsetting news, but also being very clear about the optimism and hope for the future. Most parents have never heard of CMV, so processing a complex and uncertain diagnosis can be challenging. There's so much we medical providers don't know about cCMV, that it can be difficult to provide accurate, meaningful information. As a result, the medical community has a long track record of minimizing the conversation or avoiding it altogether. Thankfully, due in large part to the work of parent advocates, there's growing momentum toward national cCMV awareness among providers and the general public. These conversations will always be difficult, but meeting families with compassion, humility, and a commitment to ongoing communication goes a long way. Feedback from families who have lived through these experiences is invaluable toward improving these conversations. " (Dr. Handel is Primary Investigator, with Sharon Nachman MD, of PROACTIVE NYS, an NIH-funded long-term follow-up study of young children with congenital CMV: www.proactivenys.org, andrew.handel@stonybrookmedicine.edu).

In my new memoir, "Had I Known about CMV: From Shock to Law," I decided to reveal my true thoughts after I received Elizabeth’s diagnosis and her predicted future. At the time, I didn’t tell my family and friends that I wished I were dead and of the various ways I told God He could kill me so it would look like an accident. When He didn't kill me, I prayed He would help me love Elizabeth – and that He did – in abundance. At first, I felt nervous sharing such personal thoughts with the world, but when I began hearing from mothers about their experience receiving the news that their child might be DeafBlind, I was glad I did.

One mom, who gave me permission to share her story told me that she was so exhausted caring for her newborn and overwhelmed by a new diagnosis her daughter received when she was eight months old, that she bought two bottles of sleeping pills and a bottle of wine and drove to a parking lot to end her life. She was saved because her husband kept calling her and leaving messages, asking her to come home and help him take care of their daughter. Initially, that was the only thing that kept me going, too – knowing that my kids needed me to take care of them. Most of us moms don't share our struggles with those closest to us because we don't want to worry those around us. We may not want them to know we’re drowning or that we feel guilty for passing something harmful onto our children.

The unconditional love I grew to feel for Elizabeth was so powerful and fulfilling that I can't imagine who I would be today if I didn’t have the chance to raise her for 16 years. Although the doctor who gave me her initial prognosis was right, she never did "rollover, sit up, or feed herself,” and she was considered “deaf-blind,” he failed to predict that for several years in a row, Elizabeth would receive the "best smiling" award at school – making me so proud when I hung her certificates on our refrigerator.

Although the mom who attempted suicide is fine now and lovingly raising her daughter, her story prompted me to ask moms how they received the congenital CMV news and what helped, hurt, or could have been done better. Although congenital CMV is a leading cause of birth defects, most moms have never heard of it until our baby gets the diagnosis. One mom said that when she got the diagnosis, she thought her daughter had something like the flu – something she’d recover from. She said it took several compassionate nurses to help her realize that her daughter could be normal – or she could be nonverbal, blind, deaf, unable to walk or move. She said, "A lot of questions stemmed from family members when they Googled it. They thought I had been promiscuous or had done IV drugs. I got blamed by my family and her dad’s family for contracting CMV."

I hope my story, and the stories that follow, will help the medical community learn how to better deliver a distressing diagnosis to a mother. For example, it’s important to remind the mother that her child is not a tragedy – but a lovely little person whose life still has purpose and meaning. In Part 2 of this article series, I will share perspective from the National CMV Foundation, resources for parents, direct quotes from families from our Facebook group and more! Stay tuned for the next edition!

In the meantime, for more information about congenital CMV and deafblindness, contact the New York DeafBlind Collaborative (NYDBC) at nydeafblind@gmail.com. For specifics on statistics, Susanne Morrow, NYDBC Project Director, suggests checking the national statistics from the annual Child Count. This is a summary of all children registered with the federally funded State DeafBlind Projects. The most recent report from 2022 is available on the National Center on DeafBlindness website: Primary Identified Etiology | 2022 National Deafblind Child Count Report.

Lisa Saunders

Lisasaunders24@gmail.com

*****************************************************************************************************

PART 2

National CMV Foundation Program Director, Amanda Devereaux RN, BSN, herself the mother of a child with congenital CMV, said, “This can be a hard diagnosis to live with. There is uncertainty, fear, anger, and regret. For most people it does get easier. You will learn to love your child exactly as they are, and you will learn that although your parenting journey is different than most, it is no less valuable or joyful. You are doing exactly what every parent should do – parent your individual child, exactly as they are, and not how you expected them to be. I think it is important to focus on the short term, at least at the beginning. I would ask myself, ‘What can I do for my child today?’ I would not allow my thoughts to drift too far into the future. It took time, practice, and counseling to be able to focus on the short term. Over time, I have been able to extend how far I can look into the future without feeling overwhelmed. You will get there. It just takes time.”

The National CMV Foundation has a very simple, but comforting flier for parents: “CONGENITAL CMV: SUPPORT AND NEXT STEPS, which includes testimonies from parents, such as Jami, who said, "It's OK to be broken and cry, and ask ‘why us?’ But at the end of the day your baby is perfect. Finding support from families similar to mine helped me remember that my child is perfect…” The National CMV Foundation hosts “Care to Talk,” a recurring, online support group for families that discusses life “before, during, and beyond congenital CMV.” If you would like to try the Foundation’s “Care to Talk”, pre-registration is required. For questions and/or to pre-register, please contact Amanda Devereaux at: amanda.devereaux@nationalcmv.org.

Several moms I polled through a CMV Facebook group have offered to share their experiences to help the medical community learn how to deliver an upsetting diagnosis:

"The doctor should make sure to point out how amazing her baby is and how lucky the baby is to have a wonderful mom. I think that will help focus back on the miracle of her child's life and show love to the baby and her mom. Knowing the doctors valued my daughter and were compassionate to her was comforting and very helpful."

"I think it's really important that doctors realize their words will stay with that mother forever. It may just be a normal day at work for them, but for us, it’s a moment that changed our whole lives. It's important to give clear, accurate information on cCMV, and though, yes, you may have to touch on the worst-case scenarios, statistics also say most children will have mild effects."

“We were very lucky. [The neurologist] didn't guess what our newborn would or wouldn't be able to do. He told us she was beautiful and what to watch for. He was her neurologist for years and was always a kind and steady influence in our lives until she was in her teens and he retired. I've always known we were blessed to have him.”

"My OB prayed for me. My fetal maternal specialist was hopeful with each appointment. He was amazing. His partner was just not, but that was just her direct personality."

"We did have some incredibly compassionate nurses and doctors that handled things really well. One doctor sat me down and told me repeatedly this wasn’t my fault. I’ve always appreciated her."

"I got a phone call from the infectious disease nurse who I didn't know, and it was terrible. I would say call people into their family doctor’s office (somewhere familiar) and maybe have the infectious disease nurse talk over the phone there.”
"I was on my own, husband at work, baby five days old, in NICU. I was told: ‘If your baby survives she will be deaf, blind, brain dead, in a wheelchair, like a cabbage.’ After that, I never heard another word.”

“I think doctors are too quick to only give the clinical list of things that are wrong and fail to tell the good sides. Even when giving horrible news, you can share that there will still be joy. My severely affected son was predicted to be 'blind, deaf, and retarded' by one NICU doctor and 'a vegetable' by another. While the first set of predictions were technically true, my son was still a happy, joyful child. He laughed and smiled constantly, loved to swim, listen to music, sing, kick, snuggle, play with rattles, and he even enjoyed riding roller coasters at Disney. Yes, he had a lot of daily medical needs. Yes, he faced life or death medical situations annually and passed away at age six. But his life was still valuable and worth living. Finally, all medical providers need to know that CMV is extremely common in children, and they are not putting themselves at unusual risk if they treat our children."

***

One mom said the poem, “Welcome to Holland,'' written by the mother of a child with Down syndrome, Emily Perl Kingsley, was very helpful. My friend, singer/songwriter Debra Lynn Alt, wrote a song to help us mothers put words and music to our feelings. She titled it, "Had I Known (about CMV)," and I listen to it often. Parents may also benefit from reading articles such as,”How to Cope When Your Unborn Baby is Diagnosed with a Birth Defect” (Children’s Hospital of Philadelphia, 2019). Parents can also contact the National Congenital CMV Disease Research Clinic and Registry, spearheaded by Gail J. Demmler-Harrison, MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and Professor, Department of Pediatrics, Infectious Disease Section, Baylor College of Medicine. Known affectionately as Dr. Gail by her CMV patients and their families, she has over 40 years of experience in congenital CMV.

When Dr. Gail was interviewed for a webinar hosted by The American College of Obstetricians and Gynecologists on presenting the diagnosis of congenital CMV to a family, she said, “First, I begin with, they’re not alone. My families think they are the only ones on the planet with a baby with congenital CMV because they’ve never heard about it. So, I explain that CMV is actually a very common virus. Most people will be infected with it. It’s usually silent – that’s why they don’t know about it…most babies who are congenitally infected with CMV will actually have little or no symptoms." Dr. Gail says the first few months are the hardest “because they often need to do evaluations, blood tests, imaging tests, hearing tests, eye exam, consultations...all during a time when they’re processing this news about their baby and also exhausted from being new parents. So, I reassure them that ... the first few months are the hardest and it does get better as their baby grows” (Compassionate Conversations: Congenital Cytomegalovirus, June 14, 2024).

“Moms with children less affected by congenital CMV shouldn't be any less important than those whose children show signs of cCMV at birth,” said Kara Russell, New York National CMV Alliance Co-Chair. “As a mother who did not find out her daughter had congenital CMV until she was five years old, we are considered ‘lucky.’...I felt completely dismissed by everyone we saw, and was repeatedly told, ‘Well, it could be worse. Be thankful it's only her hearing.’ It was as if we should be grateful, that we didn't have the right to be angry or to grieve the loss of her hearing, that it didn't matter that she was struggling in school, has balance issues that cause injury, has behavioral issues, will be undergoing CI surgery, and that the rest of her life has been altered by something we were so completely unaware of.”

In my memoir, “Had I Known about CMV: From Shock to Law,” I share how several strangers comforted or inspired me and how I learned to deal with the shock of Elizabeth’s profound brain damage by journaling, searching the Bible for relevant Scriptures, and by taking anti-anxiety medication. One Scripture that helped me move from deep depression to eventual joy was, "Perfect love casts out fear" (1 John 4:18). I learned to dwell on just loving Elizabeth and not her diagnosis and prognosis. Although I always prayed for a miracle, I also learned to just concentrate on caring for Elizabeth one day at a time, just as her nurses suggested before we brought her home from the hospital: “don’t worry about tomorrow, for tomorrow will bring its own worries” (Matthew 6:34). You can read my initial thoughts and how I began recovering from them in the “read sample” portion of the ebook or paperback version.

Although Elizabeth died in 2006 at the age of 16 during a seizure, I feel like she is still with me. She is my "Tiny Tim" who would say if she could, "And God bless us, everyone!"

For more information about congenital CMV and deaf-blindness, Susanne Morrow, Project Director, New York Deaf-Blind Collaborative, suggests checking the statistics from the National Center on DeafBlindness. She said, “This is the national child count that we report our data to every year” (click on “Primary Identified Etiology | 2022 National Deafblind Child Count Report”).

About Lisa Saunders

Lisa Saunders was the mother of Elizabeth, born with a severely damaged brain from congenital CMV in 1989. Although Lisa was a licensed, in-home childcare provider, a church nursery volunteer and the mother of a toddler, she was unaware her activities put her at increased risk for CMV. Lisa helped pass CMV legislation in both Connecticut and New York and was the recipient of the National CMV Foundation Spirit of Advocacy Award in 2023. Lisa is currently walking 360 miles across the State of New York between Albany and Buffalo with her husband, Jim, leaving behind Stop CMV rocks to help raise awareness. She is a PAC-B TV talk show host and is on the Advisory Board, as a Parent Advocate, of PROACTIVE NYS, the follow-up study of New York infants with congenital CMV, and is a member of the New York DeafBlind Collaborative, Expert Advisory Council.

Strides 4 CMV New York 5k: Families Endured Torrential Downpours to Stop CMV, #1 Birth Defects Virus

2024-07-11T13:23:00.000-07:00

"Strides 4 CMV New York 5k" 2024.

(Images submitted by Brandi Hurtubise and Kristin Schuster)

IMMEDIATE RELEASE

Lisa Saunders
LisaSaunders42@gmail.com

Families Endured a Downpour to Stop CMV, Leading Viral Cause of Birth Defects

"Strides 4 CMV New York 5k" was organized by Brandi Hurtubise, New York National CMV Foundation Community Alliance Chair

Families and friends of seven girls disabled by the leading viral cause of birth defects, congenital cytomegalovirus (CMV), gathered in the pouring rain at Knox Farm State Park in East Aurora (near Buffalo) on June 29, 2024, in honor of "National June CMV Awareness Month," to raise funds for the National CMV Foundation to combat the disease ("Strides 4 CMV New York 5k").

Lisa and Jim Saunders of Baldwinsville, the oldest parents at the "Strides 4 CMV New York 5k," marveled at the dedication of the families who overcame the obstacles of attending the outdoor, rainy event -- and the profound love these families showed for their daughters. Lisa, who has been advocating for CMV prevention education since her daughter Elizabeth was born with microcephaly (small, damaged brain) in 1989, said, "I only wish these families had heard of CMV prevention strategies before getting pregnant. Hopefully, the new CMV education law in New York and the national Stop CMV Act of 2024 will decrease the numbers of babies born with congenital CMV, which the CDC estimates to be one in 200." When Lisa was pregnant with Elizabeth, she was a licensed, in-home childcare provider, a church nursery volunteer and the mother of a toddler - all activities that put her at high risk for CMV. Elizabeth died during a seizure at the age of 16 in Rockland Country, New York. Lisa is the author of memoir, "Had I Known about CMV: From Shock to Law," and is currently walking 360 miles between Albany and Buffalo, leaving behind Stop CMV rocks with prevention tips.

According to the CDC, "You can lower your chances of getting CMV by reducing contact with saliva (spit) and urine from babies and young children. Make sure you: Do not share food, utensils, cups, or pacifiers with a child. Wash your hands with soap and water after changing diapers or helping a child to use the toilet" (cdc.gov/cytomegalovirus).

The following other mothers attending "Strides 4 CMV New York 5k" can be seen in these images submitted by Brandi Hurtubise and Kristin Schuster:

(Left to right: Jessica Keukelaar, Kristin Schuster, Brandi Hurtubise, Angela Cote, Kara Russell, and Tabitha Rodenhaus.)

Jessica Keukelaar of Macedon is the mother of Kyleigh, born with congenital CMV in 2018. When Jessica was pregnant with her firstborn Kyleigh (seen below), she was a child care provider in a daycare center and unaware of her occupational hazard for CMV. "Congenital CMV has affected every aspect of Kyleigh’s life, as well as our whole family. I wish that someone took the time to educate me about CMV since I was at an increased risk of infection.” Jessica designs CMV awareness logos for placement on her family's clothing to raise awareness.

(Kyleigh raises awareness of CMV with her bib created by her mom, Jessica.)

Kristin Schuster of Canandaigua, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old--well after the opportunity had passed to receive treatment most effective when given between ages zero to six months." She said, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure."

(Kristin and daughter, Autumn.)

Brandi Hurtubise of Buffalo, New York National CMV Foundation Community Alliance Chair: "On January 26, 2016 Samantha was born. The delivery room filled with doctors and nurses that began to immediately use the word microcephaly...As a result of Congenital Cytomegalovirus, Samantha has spastic quadriplegia cerebral palsy, microcephaly, epilepsy, profound hearing loss, and is legally blind... CMV is something that everyone should be talking about; at the very least it needs to be that piece of knowledge that's at the back of your brain and stored away for another day" (Strides 4 CMV New York 5k). Brandi can be reached at nationalcmvny@gmail.com.

(Brandi relaxes with Samantha on the shores of Lake Ontario in Summer 2024.)

Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it helped doctors diagnose why her daughter Elise failed her hearing test giving her options for early intervention. But Angela wishes she had known about CMV and how to prevent it BEFORE her pregnancy with Elise--especially since Angela had an occupational risk for it. She said, "Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened me for CMV to see if I had been exposed in the past." (Lisa Saunders interviewed Angela Cote and Brandi Hurtubise on her local access TV show: CytoMegaloVirus (CMV) - What Moms Wished They Knew, PAC-B TV, 2021).

Kara Russell of Penfield: "My daughter is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life. Lyla, my youngest child, was born full term and otherwise healthy, passing her newborn hearing screen. So, she was not tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check in summer 2023 that we learned she had profound unilateral hearing loss – that she was completely deaf in her left ear. We have no idea how long she was unable to hear accurately, even though she had been receiving speech services since age four as well as occupational therapy for coordination and balance delays. Nobody ever suggested checking her hearing. According to the CDC, ‘Hearing loss can affect a child’s ability to develop communication, language, and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential’ (CDC/HearingLossinChildren)" (statement emailed to Lisa Saunders on May 6, 2024). Kara Russell is the New York National CMV Alliance Co-Chair and can be reached at: nationalcmvnys@gmail.com.

Tabitha Rodenhaus of Kenmore is the mother of Kaia (born with congenital CMV in 2016) who paints Stop CMV rocks for distribution across New York and beyond because Kaia enjoys watching her mom work. She said, "Kaia has taught us to always embrace the gray despite her diagnosis. She's always smiling and shining bright."

In 2022, the New York Governor signed “Elizabeth’s Law” (S6287C/A7560), named in memory of Jim and Lisa's daughter, which “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.” On September 20, 2023, a universal CMV testing bill was filed in New York (A07997/S07659), which "requires cytomegalovirus screening for every newborn..."

In addition, "The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus". The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (“Congenital Cytomegalovirus (cCMV) Screening | New York State Department of Health”). The goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Bradley).

Dr. Andrew Handel, who saw these images from the rainy "Strides 4 CMV New York 5k", emailed the mothers in attendance, "It's great to see/meet all of you! If there was ever a great analogy for cCMV families/advocacy, smiling while running a 5K through a rainstorm, this must be it. Please let me know how we can collaborate on your advocacy work. For those of you who I haven't met, I'm a Pediatric Infectious Disease doc from Long Island and one of the study leads on PROACTIVE NYS (https://www.proactivenys.org/), a long-term follow-up study of children with cCMV identified on the NYS newborn screen. I meet monthly with the DOH's CMV Newborn Screen team and the Peds Infectious Disease providers around NYS who care for children with cCMV. We've recently been discussing how best to advocate for NYS legislation making cCMV a permanent part of the NYS Newborn Screen. I would love to have your thoughts on where we go next in NYS and how the medical world can support your advocacy efforts." (To learn more about the pilot study, visit: www.proactivenys.org, or contact Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University, at: andrew.handel@stonybrookmedicine.edu).

###

Memoir by mom of child with severely damaged brain: "Had I Known about CMV: From Shock to Law" by Lisa Saunders

2024-05-24T03:22:00.000-07:00

Had I Known about CMV: From Shock to Law

In celebration of June National Cytomegalovirus Awareness Month, the e-book version of "Had I Known about CMV: From Shock to Law," is free today through Thursday, June 6, 2024. Both the paperback and e-book version have a "Read sample" feature.

I was the mother of Elizabeth, born with a severely damaged brain because I contracted the common virus, cytomegalovirus (CMV), just prior to or during pregnancy. Because women of childbearing age are still largely unaware of how to prevent CMV, the leading viral cause of birth defects, I wrote "Had I Known about CMV: From Shock to Law," which features ground-breaking CMV legislation and the current Stop CMV Act (S.3864/H.R.7542), introduced by Senator Richard Blumenthal (D-CT) and Rep. Lawler, Michael (R-NY-17) on March 5, 2024.

On June 4th, I was sent an email from U.S Senator Charles E. Schumer who said: "This bill seeks to enhance newborn screening efforts for CMV. S.3864 is currently under review by the Senate Committee on Health, Education, Labor, and Pensions, and I will closely monitor this bill's progress."

The major forces behind the Stop CMV Act 2024 were the National CMV Foundation and a Connecticut CMV grandma, Ann Nyberg, "the longest-serving female news anchor/reporter in Connecticut television history” (WTNH).

Please see the following press releases for more information about Had I Known about CMV: From Shock to Law and current legislation.

If you have any questions, please let me know!

Sincerely,

Lisa Saunders, Author

LisaSaunders42@gmail.com

Advisory Board, Parent Advocate, PROACTIVE NYS

Baldwinsville, New York

Host, PAC-B TV

IMMEDIATE RELEASE

Mom of Child with Severely Damaged Brain Releases Memoir

"Had I Known about CMV: From Shock to Law" by Lisa Saunders

Baldwinsville, New York -- Although Lisa Saunders was at high risk for contracting cytomegalovirus (CMV), she wasn't educated about it and neither are most women – even though one-third of pregnant women are at high risk: “that is, they have daily household or occupational contact with children less than 3 years old” (Adler, 2011). In her new memoir, "Had I Known about CMV: From Shock to Law," Saunders shares her emotions while raising Elizabeth 1989-2006), born with a severely damaged brain from congenital CMV, and how she's trying to make women of childbearing age aware of recommendations from the CDC -- that they can reduce their chances of getting CMV by "reducing contact with saliva (spit) and urine from babies and young children...Do not share food, utensils, cups, or pacifiers with a child. Wash your hands with soap and water after changing diapers or helping a child to use the toilet" (CDC).

Excerpt of "Had I Known about CMV from Introduction:

Recently, a friend told me, “I warned my pregnant daughter about CMV, but she said, ‘Mom, if CMV was a problem, my doctor would have told me’.”
“No, they probably won't,” I said, frustrated that so little has changed since my daughter Elizabeth’s birth 35 years ago. The moment she was born, I felt a stab of fear. My immediate thought was, “Her head looks so small – so deformed."
This memoir is my heart laid bare. My desire is that it will help people experiencing their own hardships to find hope in the midst of adversity and that those who seek to raise awareness will find new ideas. Elizabeth will never have descendants, but perhaps, through her story, more children will be born healthy because their mothers knew how to stop CMV.

Saunders said she wrote the memoir in two parts:

Part I is about my life with Elizabeth (1989- 2006), including the family, friends, and strangers who comforted or inspired me. I eventually learned how to deal with my shock over Elizabeth’s profound brain damage by journaling, searching the Bible for relevant Scriptures, and by swallowing the occasional Valium. One Scripture that helped me move from deep depression to eventual joy was, "Perfect love casts out fear" (1 John 4:18). I learned to dwell on just loving Elizabeth and not her prognosis.

Part II is about the challenges of raising CMV awareness and the CMV warriors I’ve met along the way between 2006-2024. In 2015, while living in Connecticut, I collaborated with parents and doctors to help the state become the second to pass a targeted CMV testing law. Later, returning to our home state of New York, I helped get “Elizabeth’s Law,” named in memory of our daughter, passed in 2022. It requires the provision of CMV educational materials to pregnant women and child care providers. And now, as a result of an army of CMV advocates, the STOP CMV Act 2024 was introduced at the federal level.

Saunders also includes a CMV Timeline in her Appendix, which features how the State of New York has been managing the problem of CMV. (New York-related excerpts are seen below the press release.)

Saunders is currently walking 360 miles across the State of New York on the Erie Canalway Trail between Albany and Buffalo with her husband, Jim, leaving behind Stop CMV rocks to help raise awareness. She was featured in USA Today for her CMV work and was the recipient of the National CMV Foundation Spirit of Advocacy Award in 2023. To learn more about her work, visit: congenitalcmv.blogspot.com

###

Excerpts of New York-related CMV Timeline from

"Had I Known about CMV: From Shock to Law":

2018

After reading the New York Times article, “CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed,” New York Assemblymember Linda B. Rosenthal thought something needed to be done. She was able to get a targeted CMV testing law passed in 2018. A587C/S2816 “Requires urine polymerase chain reaction testing for cytomegalovirus of newborns with hearing impairments”.

2019

"Childcare workers, early interventionists, early childhood providers (including daycare providers, pre-school teachers) and Healthcare workers (including nurses, therapists)” are at increased risk for CMV stated Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, ILR Outreach Statewide and Buffalo Co-Lab, ILR School, Cornell University, in her presentation, “Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA Advisories, 2019)”. Nellie Brown said, “Universal precautions are work practices and they work very well for bloodborne pathogens such as HIV and HBV.”

2021

On April 20, 2021, New York legislators filed the CMV education bill, S6287C/A7560, named “Elizabeth’s Law,” in memory of my daughter. “Trail Works Inc. Recognizes CMV Awareness on National Trails Day” on June 5. Children featured in the music video of the event, “Had I Known [about CMV], Lyrics and Music by Debra Lynn Alt,” included mine (through a photograph), Jessica Keukelaar’s and Kristin Schuster’s (we three were caregivers/teachers during our pregnancies). Over 70 families unable to attend asked that their child’s name be placed on a silver rock.

In 2021, “Elizabeth’s Law” passed in the Senate, but the Assembly didn’t vote it by the end of the legislative session. As I awaited the 2022 legislative session to resume, Jim and I continued to leave silver “Stop CMV” rocks across New York State to raise awareness of the bill: “Erie Canal Trail: Stop Cytomegalovirus (CMV) Birth Defects. Pass "Elizabeth's Law" (Nov. 2021). Tabitha Rodenhaus of Kenmore paints the Stop CMV rocks in front of her daughter Kaia (born with congenital CMV in 2016) because she enjoys watching her mom work.

CMV is "'a virus that has a PR problem...It's a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" stated Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children's Hospital (“Dr. Sallie Permar's Work Protecting Mothers, Infants from HIV, CMV Lands Her Among 'Giants'”, 2021)

2022

Nov 28, 2022: New York Governor signed “Elizabeth’s Law,” named in memory of my daughter. S6287C/A7560, which “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.”

2023

New York: on September 20, 2023, a universal CMV testing bill was filed, A07997/S07659, which "requires cytomegalovirus screening for every newborn..."

"The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus". The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (“Congenital Cytomegalovirus (cCMV) Screening | New York State Department of Health”). The goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Bradley). (To learn more about the pilot study, visit: www.proactivenys.org, or contact Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University at: andrew.handel@stonybrookmedicine.edu, or Sharon Nachman MD, Distinguished Professor, Department of Pediatrics, Associate Dean for Research, Renaissance School of Medicine, SUNY Stony Brook).

USA TODAY's article, "This virus is a leading cause birth defects. Why isn't it screened more?" (Oct. 2, 2023) explains New York’s one-year study: “With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law [John W. Mannion, Senate sponsor], now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program..." (Cuevas).

2024

STOP CMV Act 2024 was introduced on March 5th at the federal level. Republican sponsor, Congressman Mike Lawler of the 17th District, New York, attended my daughter Elizabeth’s funeral services 18 years earlier in 2006 (he was a classmate of my older daughter when in high school). Congressman Lawler and I corresponded in 2022 about “Elizabeth’s Law” (he was Assemblyman Lawler then), and in June 2023, his staff met with National CMV Foundation board member, Dr. Sallie Permar, the chair of the Department of Pediatrics at Weill Cornell Medicine. Congressman Lawler told me, “They asked me to introduce this bill in the House." And he did! I sent Congressman Lawler one of the silver Stop CMV rocks as a thank you. If you live in the United States, please ask your congressman and U.S. senators to cosponsor the STOP CMV Act 2024 (learn how, with sample letter templates, at: “CMV Legislation | National CMV Foundation”).

"Stop CMV Act" Introduced in Congress! NY RESIDENTS: Write U.S. Senators/Congressmen to support Stop CMV Act AND NY Senators/Assemblymember to support universal CMV testing bill, A07997/S07659

2024-03-10T08:01:00.000-07:00

Dear New York State Residents:

If you want to see an end to the leading viral cause of birth defects, there are currently two bills that need cosponsors. You can help find these cosponsors by contacting your New York assemblymembers and senators PLUS your Congressman and the two U.S. Senators representing New York.

STOP CMV Act 2024 introduced at the federal level: S.3864 /H.R.7542 (pdfs of bills: House and Senate)
New York's universal CMV testing bill, A07997/S07659, which "requires cytomegalovirus screening for every newborn..." The final wording of that bill and its effective date will depend, I believe, on the pilot study that is currently underway in New York.

1) Contact your congressman and U.S Senators and ask them to cosponsor the Stop CMV Act. (letter templates from the National CMV Foundation below, and/or you can use excerpts of my letter with info specific to NY).

Find your congressman in the House of Representatives by entering your zip code in the window on the top right corner of this web page: https://www.house.gov/. Call their local office so you can find the best place to email your support, or you can try their established link for emails. Congressman Mike Lawler of the 17th District is the House of Representative sponsor. He attended my daughter Elizabeth's funeral services in 2006. His district includes all or parts of Rockland, Westchester, Putnam, and Dutchess counties. I called his Pearl River office to thank him at: 845-201-2060.

Your New York Senators:

Gillibrand, Kirsten, 202-224-4451, Letter through: https://www.gillibrand.senate.gov/contact/email-me/

Schumer, Charles, 202-224-6542, Letter through: https://www.schumer.senate.gov/contact/message-chuck

Letter templates from National CMV Foundation (or see mine below):

House Letter Template
Senate Letter Template

MY SAMPLE LETTER TO MY CONGRESSMAN SHOWS THE NEW YORK ANGLE (I sent through the website contact link, but also called his local office to get a more direct email):

Dear Congressman Brandon Williams,

Please cosponsor Stop CMV Act of 2024: S.3864 /H.R.7542 (pdfs of bills: House and Senate).

Congenital Cytomegalovirus (CMV) is the most common infectious cause of birth defects and the leading non-genetic cause of hearing loss in infants. “One in two hundred babies are born with congenital CMV, and 20% exhibit symptoms or long-term health problems. It is crucial that Congress invest in early intervention services to overcome these startling statistics,” said Congressman Lawler. “I’m proud to join my colleagues in introducing the bipartisan, bicameral STOP CMV Act. This legislation will improve access to screenings and invest in the critical research necessary to ensure children born with CMV grow up to live healthy lives” (Press Release, Mike Lawler , March 6, 2024)

I am on the Advisory Board (as a Parent Advocate) for PROACTIVE NYS, the long-term follow-up study of infants who screen positive for congenital CMV in New York (contact information for the doctors involved with that below my signature).

Here is some recent New York media coverage of the Stop CMV Act where I was quoted:

CNY Central: Baldwinsville mother applauds federal push to protect babies from CMV - CNY Central (Megan Coleman, March 8,2024)
The Citizen: “Bill in Congress aims to boost CMV newborn screening, research” (Robert Harding, Mar 8, 2024)

Our daughter Elizabeth was born with profound brain damage because I contracted CMV just prior to or early into my pregnancy in 1989. As a professional child care provider and mother of a toddler, I was at higher risk for CMV yet was never told to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC). My efforts on a recently passed New York CMV law (named "Elizabeth's Law" in memory of my daughter) were featured in USA TODAY's article, "This virus is a leading cause birth defects. Why isn't it screened more?" (Oct. 2, 2023), by Eduardo Cuevas. Reporter Cuevas also included the news that New York "joined a growing number of states to universally screen early for CMV, prompted, in large part, by parents whose children have experienced health effects from the virus." Effective October 2, 2023, "New York begins a one-year pilot [study], testing all newborns for CMV using the routine method of a heel prick that leaves a dried blood spot on filter paper...With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law [John W. Mannion, Senate sponsor], now has a bill before the Legislature [A07997/S07659] following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program...If CMV is found within the first 24 to 36 hours of birth, officials can connect families with primary care pediatricians and specialists to monitor and address neurologic, hearing and vision outcomes if problems develop, Caggana said."

The STOP CMV bill introduced at the federal level will increase the conversation about the problem of CMV, which I believe will help advance New York's A07997/S07659, which "requires cytomegalovirus screening for every newborn" in Albany.

The bipartisan Stop CMV Act authorizes funding to states for hospitals and other healthcare entities caring for infants to administer congenital CMV tests and encourages state healthcare agencies to prescribe standards and procedures for the administration of these tests. The bill also creates grant programs to provide funds to administer CMV tests, improve CMV data collection systems, and assist in CMV education and training. Lastly, the bill advances National Institutes of Health research for screening techniques, diagnostics, prevention, vaccines, and treatments.

With your help, we can reduce the impact of cCMV!

Please cosponsor this important bipartisan legislation today!

Sincerely,

Lisa Saunders

Baldwinsville, NY 13027
845-222-8593, LisaSaunders42@gmail.com

2) Contact your New York state senators and assemblymembers and ask them to cosponsor New York's universal CMV testing bill, A07997/S07659, which "requires cytomegalovirus screening for every newborn..."

Find your Assemblymember: https://nyassembly.gov/mem/search/
Find your New York Senator: https://www.nysenate.gov/find-my-senator

MY SAMPLE LETTER TO MY ASSEMBLYMEMBER

Dear Assemblymember William B. Magnarelli,

My name is Lisa Saunders and I live in your district on 216 Peakwood Lane in the Town of Van Buren. Thank you again for co-sponsoring Elizabeth’s Law, named in memory of my daughter (it passed in 2022), requiring the provision of CMV educational materials to child care providers and pregnant women. The new law was featured recently in USA TODAY: "This virus is a leading cause birth defects. Why isn't it screened more?" (2023).

Because it's important to test every newborn for CMV, I am asking that you now co-sponsor A07997/S07659, which "Requires cytomegalovirus screening for every newborn by administration of a urine polymerase chain reaction (PCR) test." Introduced on Sept. 20, 2023, A07997/S07659 is an amendment to the 2018 CMV law, requiring only newborns who fail the hearing screen be tested for CMV.

According to Crain's New York Business, "State Sen. John Mannion, who sponsors [this] bill that would make the screening permanent, said early diagnosis and treatment are key in mitigating long-term health problems for babies, emphasizing the need for screening. According to Assemblywoman Linda Rosenthal, who also sponsors the bill, further action will depend on the results of the pilot (Sept. 28, 2023).

According to Joseph Domachowske, MD, professor of pediatrics, microbiology and immunology with a specialty in pediatric infectious diseases at SUNY Upstate Medical University, "not all congenitally infected babies have hearing loss at birth, and most babies born with CMV can be asymptomatic, so the best way to diagnose CMV early involves prevention education and better forms of testing. 'Hearing tests are somewhat helpful, but it’s not the best answer, and it’s not the best way to handle this,' Domachowske said. “What’s coming down the pike is adding CMV to universal newborn screening panels, and having that test done will be very specific for CMV” (Post-Standard, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", 2023).

Senator Mannion and Assemblymember Rosenthal may ask that universal testing become permanent practice in New York after the results are in from the pilot study (see below), and they will discuss further if it's best to require blood or urine testing.

Current Pilot Study in New York:

According to the September 8, 2023, webinar held by New York State Newborn Screening Program, the goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Newborn Screening for Congenital Cytomegalovirus: A 1 Year Pilot, Sarah Bradley, MS, CGC, 2023).

According to USA Today, "With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law, now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program." (USA Today, Oct 2, 2023)

CMV educational materials, some created by the New York Department of Health can be found here under Additional Resources and Family Brochures (https://www.wadsworth.org/programs/newborn/screening/additional-testing).

To learn more about New York and CMV, contact the sponsors of A07997/S07659 at:

Assemblymember Linda B. Rosenthal’s office at 518/455-5802, or email Nick Guile, Legislative Director for Assemblymember Rosenthal, at guilen@nyassembly.gov
Senator John W. Mannion's office at 518-455-2954, or email Noah Rohde, Legislative Director for Senator Mannion, at noah@senatormannion.com

In 2022, Minnesota became the first state to pass legislation requiring every newborn be tested for CMV.

Sincerely,

Lisa Saunders, CMV Parent Advocate

Advisory Board, PROACTIVE NYS (the NIH-funded follow-up study of young children with congenital CMV).

Baldwinsville, NY 13027

Andrew.Handel@stonybrookmedicine.edu

Doctor contacts:

Doctors who helped provide backup information on the 2022 CMV "Elizabeth's Law" (I can give you phone numbers if you need them):

Dr. Sallie Permar, M.D. PhD., Weill Cornell Pediatrician-in-Chief, Board member of the National CMV Program, sap4017@med.cornell.edu

Sunil K. Sood, M.D., Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children's Medical Center and Professor, Zucker School of Medicine at Hofstra/Northwell, SSood@northwell.edu

To learn more about PROACTIVE NYS, the NIH-funded long-term follow-up study of young children with congenital CMV (cCMV), visit: https://www.proactivenys.org/ or contact:

Andrew S. Handel, MD, FAAP

Assistant Professor of Pediatrics

Division of Infectious Diseases

Stony Brook Children's Hospital

Renaissance School of Medicine at Stony Brook University

Office: 631.444.7692

Sharon Nachman MD

Distinguished Professor

Department of Pediatrics

Associate Dean for Research

Renaissance School of Medicine

SUNY Stony Brook

Sharon.nachman@stonybrookmedicine.edu

MY NOTES:

1. S.3864 — 118th Congress (2023-2024)

Stop CMV Act of 2024Sponsor: Blumenthal, Richard [Sen.-D-CT] (Introduced 03/05/2024) Cosponsors: (2)Committees: Senate - Health, Education, Labor, and PensionsLatest Action: Senate - 03/05/2024 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions)
1. H.R.7542 — 118th Congress (2023-2024)To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.Sponsor: Lawler, Michael [Rep.-R-NY-17] (Introduced 03/05/2024) Cosponsors: (1)Committees: House - Energy and CommerceLatest Action: House - 03/05/2024 Referred to the House Committee on Energy and Commerce. (All Actions)

Brandi Hurtubise, New York National CMV Alliance Chair, is hosting a NY Strides for CMV event. It will take place at Knox Farms on June 29, 2024, in honor of June CMV Awareness Month. This may be the link for where the event is being held, but I'm not sure: Knox Farm State Park, East Aurora, NY. For more info, contact Brandi at:nationalcmvny@gmail.com)

Kara Russell of Penfield (near Rochester) said, "My daughter is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life. Lyla, my youngest child, was born in 2018 and passed her newborn hearing screen, so she wasn't tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check in summer 2023 that we learned she had profound hearing loss - that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately, even though she was receiving speech services since age four and had some coordination delays. According to the CDC, "Hearing loss can affect a child’s ability to develop communication, language, and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential" (CDC/HearingLossinChildren). Lyla's pediatrician referred us to a pediatric audiologist who, after confirming the hearing loss, referred us to an ENT. In January 2024, the ENT said she wanted to test Lyla's newborn blood spot for Congenital CMV. She explained that I may have contracted CMV while pregnant, passing it to my unborn child. The test came back positive. I was told that Lyla might lose hearing in her other ear and she needed to have her hearing tested every three months indefinitely because hearing loss from congenital CMV can be progressive. To say I was dumbfounded is an understatement. I had never heard of CMV despite having two older children and numerous prenatal visits. I was angry to learn that something I never knew existed can cause permanent disabilities and that I might have been able to prevent it if I had known the precautions to take. Now, Lyla's school is conducting cognitive testing as they suspect a delay. My goal is for every newborn to be screened for congenital CMV and for CMV education to be presented during prenatal visits since a woman may be able to reduce her chances of contracting it."

Rocks painted by Tabitha Rodenhaus in honor of daughter Kaia. Jim and I leave them along the Erie Canalway Trail between Albany and Buffalo.

Kristin Schuster of Canandaigua, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old--well after the opportunity had passed to receive treatment most effective when given between ages zero to six months. She was not diagnosed with congenital CMV at birth despite failing her newborn hearing screen multiple times, having 'low for gestational age' birth weight, and microcephaly. Autumn received her first pair of hearing aids for bilateral severe hearing loss at 4 months old, glasses for vision impairment at 5 months, an MRI showing brain calcifications, very significant global delays, and received a g-tube for feeding at 15 months of age. Up until then, all of the doctors and specialists we were seeing claimed that her diagnoses were 'unrelated.' It wasn't until I read an article about CMV posted in a Facebook group for Rochester parents of children with hearing loss that I had that 'aha' moment that congenital CMV must be the root cause of all of my daughter's difficulties. When I requested to have her tested for CMV, I was initially given pushback, but when I demanded her newborn blood spot be tested, her neurologist arranged to have it tested from where it was banked in Albany. When the test came back, we finally had our confirmed diagnosis of congenital CMV--too late for her to receive treatment in the optimal first months of life."

Kristin, myself and Brandi Hurtubise, New York National CMV Foundation Alliance Chair and mother of Samantha, were already featured together in the article, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", The Post-Standard, Vallelunga, E., Jan.1, 2023, Syracuse.com.

"Our daughter Elizabeth was born with profound brain damage because I contracted CMV just prior to or during my pregnancy in 1989. As a professional child care provider and mother of a toddler, I was at higher risk for CMV, yet was never educated about this risk or how to prevent contracting CMV. Elizabeth's disabilities might have been prevented had I known to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). My goal is that all women of childbearing age across the U.S. will know how to prevent CMV before becoming pregnant." In 2022, Elizabeth’s Law was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women. (USA TODAY: "This virus is a leading cause birth defects. Why isn't it screened more?", 2023).

Honoring the memory of your child

2023-12-11T04:35:00.000-08:00

The empty seat symbolizes my daughter's absence at Christmas. (Lisa Saunders)

I know several mothers who are missing a child this holiday season. Hopefully, they have found - or will find - a way to honor their child's memory and a reason to move forward until they meet again.

One mom, Marti Perhach, just told me her holiday tradition: "We have a little stocking for Rose and a little tree we put up for her every year." Rose, Marti's fourth child, was stillborn due to group B strep (GBS). Marti has made it her mission to help prevent this from happening to other families. "Although there are many ways to constructively work through grief and honor the memory of a loved one, what helped take the edge off the pain for me has been to advocate for awareness and prevention of group B strep disease, the cause of Rose's death in utero." Marti Perhach is the co-founder of Group B Strep International (GBSI) and contributed significantly to the collaborative efforts to successfully campaign for universal screening for GBS.

My daughter Elizabeth would have been 34 this Christmas 2023 if she hadn't been born with congenital cytomegalovirus (CMV). The moment she arrived on December 18, 1989, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed. "The neonatologist said, "Your daughter has microcephaly--her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." Pregnant women who care for young children are at a higher risk for catching CMV because preschoolers are the majority of carriers. Just prior to or during pregnancy, women need to be careful not to kiss young children on the mouth or share food with them. I felt sick at what my lack of knowledge had done to my little girl.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree. It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house to escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, the Book of Psalms, and inspiring movies such as "It's a Wonderful Life," where character George Bailey, contemplating suicide, prayed, "Dear Father in Heaven …show me the way. I’m at the end of my rope…show me the way, oh God.”

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and especially enjoyed being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left. At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone. While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

As we prepare to celebrate another Christmas without Elizabeth, I no longer feel heartache when I bring the decorations out of storage. I smile remembering how Elizabeth used to love to sit on the couch with her lazy, old dog and watch us decorate.

Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it beside the fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say, if she could, “God bless us, everyone!”

Like my friend Marti, I, too, found a way to take the edge off the pain of missing her. Since Elizabeth no longer needed my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention. Elizabeth's disabilities might have been prevented had I known to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). In 2022, “Elizabeth’s Law,” was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women (Baldwinsville couple's advocacy inspires legislation for CMV awareness, 2023).

My ultimate dream is that all women of childbearing age will learn about CMV prevention before getting pregnant since half of pregnancies are unplanned. One way I continue to raise awareness is by walking across the State of New York leaving behind "Stop CMV" rocks with CMV prevention tips painted on the back by another mom, Tabitha Rodenhaus. (Learn more from the National CMV Foundation, founded by other moms).

Since commencing our trek in 2020, Jim and I have walked over 2/3 across New York (242 miles) on the 360-mile Erie Canalway Trail between Albany and Buffalo. We tackle new sections of the trail about twice a month – in all kinds of weather. We’ve been chased by mosquitoes, biting flies and lightning. We’ve endured torrential downpours, blinding snow, chafing underwear, aching feet, and swollen knees. We’ve faced snakes, floods, ice, and a smelly, dead opossum. You can join our adventure by clicking on my travel video, “Hiking the Erie Canalway Trail, Vote on 7 Wonders, Stop CMV,” which features why the Canal was considered the 8th Wonder of the World, what it's like to walk, rather than bike, the Trail (even Santa bikes the Trail!), and where my Aunt Rebecca’s body was found in the canal in an apparent suicide. The bridge she likely drove into the canal from reminds me of the bridge over the canal in Seneca Falls, New York, where a woman’s 1917 suicide attempt is noted on a plaque honoring the man who drowned while successfully saving her.

Seneca Falls is believed to be the inspiration for Bedford Falls in the movie, "It's a Wonderful Life." Much of the memorabilia featured in the It’s a Wonderful Life Museum in Seneca Falls was donated by a mother, Karolyn Grimes, the actress who played little Zuzu Bailey. She wanted to honor the memory of her son who committed suicide at 18. "Grimes says the optimistic message of It’s a Wonderful Life, which she helps to spread through personal appearances, resonates because it acknowledges life’s hardships" (People.com). Every December, Seneca Falls hosts an annual "It's A Wonderful Life Festival." Last year, I met actress Karolyn Grimes and was touched by how compassionately she listened to our story about Elizabeth.

Jim and I met actress Karolyn Grimes, who played little Zuzu Bailey, at the It's a Wonderful Life Festival in 2022.

Another way I fondly recall Elizabeth's short life is to remember I will see her again someday. My father captured that truth when he wrote the fairy tale, "The Woodcutter’s Tale" (you can read this very short story on my blog by clicking here).

I find this Scripture motivating for moving forward after the death of a child: "But now he is dead. Why should I fast? Can I bring him back again? I shall go to him, but he will not return to me” (2 Samuel 12:23).

After Losing a Child: My Christmas wish for others

2023-12-01T09:59:00.000-08:00

My daughter Elizabeth, born December 18, 1989, would have been 34 this Christmas 2023 if she hadn't been born with congenital cytomegalovirus (CMV). I know there are a lot of other mothers out there who are missing a child this Christmas. Hopefully, they have found a reason to move forward.

Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed. ”The neonatologist said, "Your daughter has microcephaly--her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.

Why hadn’t I heard of CMV before and the precautions to take? While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree. It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. We were eventually able to move forward as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone. While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say, if she could, “God bless us, everyone!”

I’m glad Elizabeth is free from suffering, glad she is safe in her new, Heavenly home. I knew I would need reminders of where Elizabeth was and what she is enjoying, so I had engravers etch on the back of her headstone that she is dwelling in the house of the Lord where: "...the lame leap like a deer and the mute tongue shout for joy" (Isaiah 35:6). Many times when I was lost in despair those first few years, I visited her stone, hugged it, and left somewhat cheered as I pondered her new life. When my time comes, I will see Elizabeth again.

My father wrote a fairy tale that I found very helpful after Elizabeth died, The Woodcutter’s Tale. To read it on my blog, click here, or download the free pdf with its color images and comments by a therapist on grief by clicking here.*

The Only Thing I Can Do for Elizabeth Now

Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention.

After presenting the story of Elizabeth's life at the first international Congenital CMV conference held in the U.S, at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"

Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my writing, speaking engagements, and contacting agencies I hope will help. Thankfully, there is a large army of CMV parents and medical professionals doing the same thing.

Please share the following with women of childbearing age: Elizabeth's disabilities might have been prevented had I known to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV).

In 2022, “Elizabeth’s Law,” was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women (USA TODAY: "This virus is a leading cause birth defects. Why isn't it screened more?", 2023).

Thank you for reading my story.

Sincerely,

Lisa Saunders

LisaSaunders42@gmail.com

My history and CMV books

USA Today - Women's Rights Issue Gets National Publicity. Help promote a "Woman's Right to Know About #1 Birth Defects Virus, cytomegalovirus (CMV)" and find co-sponsor to Blumenthal's "Stop CMV Act of 2023"

2023-10-04T05:33:00.006-07:00

I've been working on a women's rights issue for decades, but only recently has it been getting the major publicity it deserves. In USA Today, in the front page article, "This virus is a leading cause birth defects. Why isn't it screened more?" the reporter included the following information about how we're trying to build on the women's rights movement that started in Seneca Falls, NY:

"Saunders, whose daughter contracted the disease in the 80s, has continued to advocate for CMV awareness as a women’s rights issue. In the last three years, she and her husband Jim, 65, have begun walking the entire Erie Canalway that runs across New York. They hope to complete it by the canal's bicentennial anniversary, in 2025. The 363-mile waterway allowed American commerce to expand. It also passes near several historic sites from the suffragist movement, including Seneca Falls, the site of the pioneering 1848 women’s rights convention. Saunders said she hopes that women find out about CMV before they’re pregnant, during their childbearing years. She wants prevention and newborn screening for the infection to become the standard of care, and, more than anything, she hopes knowledge about CMV to be commonplace."

Congress established the Erie Canalway National Heritage Corridor in 2000 because it “facilitated the movement of ideas …like…women's rights…across upstate New York to the rest of the country”(106th Congress). We are leaving #Stop CMV rocks along the Erie Canalway Trail to comply with Congress' recommendation that "more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (112th Congress, 2011).

Our daughter Elizabeth was born with brain damage in 1989 because I contracted CMV just prior to or during my pregnancy. I might have prevented her disabilities had I known to lessen my "risk of getting CMV by reducing contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). In 2022, “Elizabeth’s Law,” named in memory of our daughter, was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women.

Many women across the country have already signed the "Declaration of Women's CMV Rights and Sentiments," which is based on the 1848 Women's Rights "Declaration of Sentiments" signed in Seneca Falls.

The following are some of the reasons women are not routinely educated about CMV:

1) Doctors don’t want to frighten, worry or burden” patients: New York Times: "Guidelines from ACOG suggest that pregnant women will find CMV prevention 'impractical and burdensome,' especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.” (Saint Louis, 2016).

2) Fearmongering: "Nearly half of surveyed healthcare professionals (HCPs) hesitate to discuss CMV, citing concerns of fearmongering among their patients."(Panther, MD, "Moderna Addresses Awareness Gap, Builds Community Trust To Boost CMV Trial Recruitment," Sept. 20,2023)

3) Medical training downplays the dangers. Pediatrician Megan Pesch, M.D., of the University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with congenital CMV and a progressive hearing loss, said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

4) Caregivers/Teachers at greater risk, but there are no federal laws governing CMV education policies: Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), the Department of Labor states, "Education and training requirements vary by setting, state, and employer."

5)"Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).

There is still a lot to do to raise awareness among women of childbearing age so they can know about CMV before getting pregnant. The song, "Had I known (about CMV)," by Debra Lynn Alt, expresses how many of us mothers feel.

Perhaps you are able to help raise awareness of CMV through sharing this message?

And/or, perhaps you can help find a Republican U.S. Senator to co-sponsor "Stop CMV Act of 2023"? The USA Today article announced, "In June, U.S. Sen. Richard Blumenthal, D-Conn., announced he would introduce the Stop CMV Act of 2023 to incentivize hospitals and health care providers to screen for CMV in newborns’ first three weeks. The bill has yet to be formally introduced in Congress. Blumenthal is seeking a Republican co-sponsor. 'Congenital CMV is a major public health challenge and, unfortunately, parents are almost totally unaware of it and providers aren’t able to detect it as often as they should,' Blumenthal said in a statement" (USA TODAY, "This virus is a leading cause birth defects. Why isn't it screened more?", Cuevas, E. Oct. 2, 2023).

Perhaps you have a connection to one of these Republican U.S. Senators found at: https://www.republicanleader.senate.gov/senate-resources/republican-senators

Sincerely,

Lisa Saunders

The USA Today article made it into Yahoo news (see newsfeed below)

Democrat and Chronicle

CMV New from NY: All newborns tested (DBS) for 1 year, bill submitted for universal screening (PCR), and new travel video features moms raising awareness across the state and song, "Had I Known (about CMV)"

2023-09-23T05:49:00.016-07:00

#Stop CMV rocks painted by Kaia's mom, Tabitha Rodenhaus of Kenmore (near Buffalo).

1) "The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus" (NY Dept. of Health, Sept. 29, 2023). The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (NY Dept. Health, Wadsworth Center, Sept 1, 2023). More information below my signature.

2) On Sept. 20, 2023, the New York Assembly and Senate introduced bill A07997/S07659: "Requires cytomegalovirus screening for every newborn by administration of a urine polymerase chain reaction (PCR) test." "State Sen. John Mannion, who sponsors [this] bill that would make the screening permanent, said early diagnosis and treatment are key in mitigating long-term health problems for babies, emphasizing the need for screening. According to Assemblywoman Linda Rosenthal, who also sponsors the bill, further action will depend on the results of the pilot. (Crain's New York Business, Sept. 28, 2023). (New York already has laws regarding targeted CMV testing and the provision of prevention education materials to pregnant women and child care providers.)

3) My new travel video about our 360-mile walk across New York State to raise CMV awareness is now airing. "Hiking the Erie Canalway Trail, Vote on 7 Wonders, Stop CMV" showcases the work of New York parents, National CMV Foundation, and others. The video reminds the public that Congress established the Erie Canalway National Heritage Corridor in 2000 because it “facilitated the movement of ideas …like…women's rights…across upstate New York to the rest of the country”(Congressional Bills 106th Congress). We are leaving #Stop CMV rocks along the Trail to comply with Congress' recommendation that "more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (S.Res.215 — 112th Congress, 2011).

Many women across the country have already signed the "Declaration of Women's CMV Rights and Sentiments," which is based on the 1848 Women's Rights "Declaration of Sentiments" signed in Seneca Falls. The song, "Had I known (about CMV)," expresses how many of us feel.

There is still a lot to do to raise awareness among women of childbearing age so they can know about CMV before getting pregnant. So, we keep putting one foot in front of the other.

More information about the pilot study below my signature.

Sincerely,

Lisa Saunders

www.AuthorLisaSaunders.com

(https://www.wadsworth.org/news/congenital-cytomegalovirus-ccmv-screenin g).

How CMV affected me: Our daughter Elizabeth was born with brain damage in 1989 because I contracted CMV just prior to or during my pregnancy. I might have prevented her disabilities had I known to lessen my "risk of getting CMV by reducing contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). In 2022, “Elizabeth’s Law,” named in memory of our daughter, was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women.

New York's Congenital Cytomegalovirus (cCMV) Screening

"With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law, now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening.

"The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program." (USA Today, Oct 2, 2023)

I'm delighted about the pilot study because in addition to being helpful in regard to early intervention and research, it will further educate healthcare professionals about CMV. Too many children with disabilities have never been properly diagnosed with congenital CMV. The article, "Washing our hands of the congenital cytomegalovirus disease epidemic," makes the point that the "virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).

The following mother expresses why screening all newborns for CMV is important:

Kristin Schuster of Canandaigua, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old--well after the opportunity had passed to receive treatment most effective when given between ages zero to six months. She was not diagnosed with congenital CMV at birth despite failing her newborn hearing screen multiple times, having 'low for gestational age' birth weight, and microcephaly. Autumn received her first pair of hearing aids for bilateral severe hearing loss at 4 months old, glasses for vision impairment at 5 months, an MRI showing brain calcifications, very significant global delays, and received a g-tube for feeding at 15 months of age. Up until then, all of the doctors and specialists we were seeing claimed that her diagnoses were 'unrelated.' It wasn't until I read an article about CMV posted in a Facebook group for Rochester parents of children with hearing loss that I had that 'aha' moment that congenital CMV must be the root cause of all of my daughter's difficulties. When I requested to have her tested for CMV, I was initially given pushback, but when I demanded her newborn blood spot be tested, her neurologist arranged to have it tested from where it was banked in Albany. When the test came back, we finally had our confirmed diagnosis of congenital CMV--too late for her to receive treatment in the optimal first months of life" (https://congenitalcmv.blogspot.com/2023/01/new-york-test-every-newborn-for-cmv.html).

Kristin's daughter Autumn was her first child, so Kristin assumes she caught CMV from the young children she worked with. Kristin told me, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." (You can watch Kristin with her daughter Autumn at our June CMV Awareness Month event in the music video, Had I Known, Lyrics and Music by Debra Lynn Alt , 2021.)

Kristin, myself and Brandi Hurtubise, New York National CMV Foundation Alliance Chair and mother of Samantha, are featured in the article, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", The Post-Standard, Vallelunga, E., Jan.1, 2023, Syracuse.com, Dec. 27, 2022 (Facebook).

It's interesting that recent newborn screening for CMV has seen a decrease in congenital infections. "The hygienic precautions we all have engaged in during the pandemic -- masking, hand-washing and infection prevention behaviors -- were almost certainly responsible for the reduction in CMV transmission, which in turn protected mothers and newborns from the potentially devastating effects of the CMV virus," Schleiss said in a school news release. Researchers also attributed the reduction to stay-at-home initiatives and the closing of group child care centers during those months."(Pandemic Silver Lining: Drop in Infections That Cause Birth Defects, USNews.com, Sept. 12, 2022).

Minnesota has a good list of protocols to follow when a child tests positive for cCMV: https://www.health.state.mn.us/people/newbornscreening/program/cmv/faq.html

Who will ensure pregnant caregivers/teachers know about cytomegalovirus (CMV), the #1 birth defects virus, and how to reduce their risk of contracting it?

2023-03-25T04:42:00.005-07:00

In the above interview, The Path to CMV Prevention - 03/20/2023 (Public Access Channel Baldwinsville), I share my cytomegalovirus (CMV) journey and laws passed or sought.

I am a former, licensed in-home child care provider who was unaware of her occupational risk for CMV - and how to reduce that risk-- until it was too late to help my newborn. When I learned about CMV after receiving my daughter Elizabeth’s diagnosis of congenital CMV, my head spun. I thought I lived in a country that told its workers about their occupational hazards. Elizabeth’s brain was small and damaged. She had hearing loss, blindness, mental challenges, cerebral palsy and epilepsy. She died after a seizure in 2006 at the age of 16.

In 2012, I received an email from a distressed grandmother about her grandson just born with congenital CMV in Connecticut. The baby's mother was a high school student interning in a daycare center. The young mother, just like me decades earlier, was unaware she was putting her pregnancy at increased risk by working with young children. When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why haven’t you launched an awareness campaign?" I tried to explain that I've been doing just that for years through my writing and speaking, but with little, long-term result. I believe it will take laws to ensure child care providers learn about CMV.

To date, I continue to hear from child care providers distraught that their employers didn't educate them about CMV--despite the fact OSHA recognizes CMV as an occupational hazard to them (https://www.osha.gov/cytomegalovirus/hazards). It pains me that the newborns of our nation's caregivers/teachers are not benefitting from the Occupational Safety and Health Act of 1970, which requires workers receive "information and training about hazards”.

Recent studies show that child care providers are largely unaware of CMV and many acknowledge using diaper wipes to clean (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). In addition,

specific information about CMV is not reaching child care providers despite guidelines from the following organizations:

National Association for the Education of Young Children (NAEYC) has procedures in place to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…" (NAEYC Early Childhood Program Standards and Accreditation Criteria, p. 90).
American Academy of Pediatrics states, "Up to 70% of children ages 1 to 3 years in group care settings excrete the virus...Female employees of childbearing age should be referred to their primary health care provider or to the health department authority for counseling about their risk of CMV infection. This counseling may include testing for serum antibodies to CMV to determine the employee’s immunity against CMV infection...it is also important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy” (Staff Education and Policies on Cytomegalovirus (CMV), Caring for our Children, American Academy of Pediatrics, American Public Health Association, National Resource Center for Health and Safety in Child Care and Early Education. Retrieved from: http://nrckids.org/CFOC/Database/7.7.1.1, revised 2017).
CDC and American College of Obstetricians and Gynecologists (ACOG) guidelines, and those of other well-respected organizations, are below my signature.

According to the CDC, about 1 out of 200 babies is born with congenital cytomegalovirus or CMV. Of those, 1 out of 5 will have permanent disabilities (www.cdc.gov/cmv). "CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities" (Lantos et al, 2017).

Between 8 - 20% of child care providers contract CMV every year (American Academy of Pediatrics) as compared to 1-4% of women (who have never had CMV) in the general population (CDC).

Most caregivers/teachers are still unaware of CMV because:

1) Although OSHA lists CMV as a "Recognized Hazard", there are no federal laws governing CMV education policies for child care workers. The Department of Labor states, "Education and training requirements vary by setting, state, and employer." An employer once admitted to me that the inconvenient truth about CMV in child care made her worry about recruiting providers, but she did the right thing and sent a memo to her staff. However, months later, a volunteer there told me that none of the new staff knew about CMV (which is why I believe only laws will make a true difference). One state policy maker told me that the content of their health and safety training is part of "our state plan and is based on federal requirements."

2) CMV education is not "part of standard prenatal care” (Washington Post, 2021).

3) Doctors don’t want to frighten, worry or “burden” patients (New York Times, 2016).

4) CMV is a “silent virus” that goes largely undiagnosed, so even the medical community isn't fully aware of how common it is: "The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.” (Washing our hands of the congenital cytomegalovirus disease epidemic, Cannon and Davis, 2005).

5) Medical training downplays the dangers. Michigan pediatrician Megan Pesch, MD, was shocked when her third daughter was born with congenital CMV. She stated that "many health-care providers tend to minimize or ignore the risks." She said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...”(Washington Post, 2021).

Some in the medical community are unsure that prevention education can make a difference (so why "burden" women with information about CMV), yet according to education studies, the efficacy of hygienic precautions has been shown to be greater than 75% (Adler, 2015). In addition, if child care providers knew about CMV, they could discuss their risk with their doctor and decide their best course of action to protect their pregnancies. Child care providers may determine to be 1) more careful to follow infection control protocol, 2) ask to work with children over two, or 3) decide to leave the child care industry during pregnancy.

I recently met two mothers like me, former caregivers/teachers, at the June 2021 Cytomegalovirus Awareness Month event in central New York where we placed over 220 silver rocks (the color of CMV awareness) on the Trail of Hope (Buchiere, 2021) to honor the estimated number of babies born disabled by congenital CMV in New York each year. You can watch Autumn (born with congenital CMV in 2015), the beautiful daughter of Kristin Schuster of Canandaigua, "help" us with the rocks in the music video, "Had I Known, Lyrics and Music by Debra Lynn Alt" (YouTube). Autumn's mother, Kristin, stated that her "risk for contracting CMV came through her former job as a pre-kindergarten teacher when she was pregnant with her daughter Autumn" (Vallelunga, 2022). Jessica Keukelaar of Macedon watched us place the CMV rocks with her first child Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked with young children during her pregnancy and was unaware of her occupational risk for CMV. In support of a 2022 New York CMV education bill (A7560B), Jessica Keukelaar wrote a letter stating, “I was a caregiver in a daycare center when I became pregnant with my daughter born with congenital cytomegalovirus (CMV)... I had never heard of CMV or the precautions to take. This bill is important to me because it came as a complete shock when my daughter was born full term, in 2018, with numerous urgent health issues due to CMV... My daughter has developmental delays, spastic cerebral palsy which affects her entire body, eating and digestive difficulties, progressive hearing loss, microcephaly, and more...Congenital CMV has affected every aspect of Kyleigh’s life, as well as our whole family. I wish that someone took the time to educate me about CMV since I was at an increased risk of infection ”(Memo in Support of A7560B, 2022).

In 2022, we three moms helped New York pass the CMV education bill A7560B, named "Elizabeth's Law" in memory of my daughter. Although it is now required for child care providers to receive printed information about CMV (NYAssembly.gov, 2022), they are still not required to receive actual training on this recognized "hazard”.

I, and others before me, have asked OSHA if they can add CMV to its bloodborne pathogens standard, because then, "employers having employees with exposure to blood or other potentially infectious materials (OPIM) must train employees annually regardless of the employees' prior training or education" (Standard Interpretations, 2007). I think it's important to recognize the significance of this statement made in 2022: "Childcare workers, but not healthcare workers, have an increased risk of prevalent and incident CMV infection...These findings suggest that enforcing simple, conventional hygienic measures in childcare settings could help reduce transmission of CMV..."(Balegamire et al.,2022).

Although there are several organizations geared to childcare providers that mention CMV, the information is not actually appearing in the training and/or packets of information given to new hires or volunteers. In the U.S., “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases” (Thackeray and Magnusson, 2016).

Parents of children in day-care centers are also at increased risk for contracting CMV (Pass et al, 1986). “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies” (“CMV In Pregnancy: What Should I Know?”, Demmler-Harrison, 2014).

If training incurs additional costs, it is also important to consider the medical care costs of NOT preventing congenital CMV: "Congenital CMV-related sequelae affect over 5000 children annually, and costs are greater than $1 billion annually in direct medical care in the United States" (Kabani, 2020). Of course there are other costs to congenital CMV, such as lost wages, the cost of providing specialized education, etc. Another estimate: "at least 3000 [newborns] are estimated to develop permanent neurologic disabilities each year due to cCMV infection...With an estimated annual cost of up to $4 billion in the United States, cCMV infection is an enormous public health concern..." (Gantt, S, 2016).

Please see CMV educational resources below my signature. Thank you for your attention to this matter.

Sincerely,

Lisa Saunders

Baldwinsville, NY

About Lisa's CMV work

RESOURCES TO HELP EDUCATE CHILD CARE PROVIDERS

1. Centers for Disease Control and Prevention (CDC) CMV info available in English and Spanish: "Congenital CMV Facts for Pregnant Women and Parents":https://www.cdc.gov/cmv/resources/pregnant-women-parents.html

2. Caring for Our Children (AAP et al.) has a page that can be downloaded/ printed as a pdf. Click "Save as PDF" found on the right hand corner of: "Staff Education and Policies on Cytomegalovirus (CMV)" (American Academy of Pediatrics, American Public Health Association, National Resource Center for Health and Safety in Child Care and Early Education. (Revised 2017). National Health and Safety Performance Standards: Guidelines for Early Care and Education Programs. Retrieved from Caring for Our Children:http://nrckids.org/CFOC/Database/7.7.1.1).

3. CMV Training Module for child care providers (University of Connecticut):https://youtu.be/k9MFAEYVuLs

4. National CMV Foundation has attractive wall fliers: https://www.nationalcmv.org/resources/educational-downloads

5. Model Child Care Health Policies, a book published by the American Academy of Pediatrics, has a sample document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (AAP Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).

6. For Employers: Publication: Brown, N. J. (2019, November). "Occupational exposure to cytomegalovirus (CMV): Preventing exposure in child care and educational settings, including OSHA advisories." Ithaca, NY: Cornell University, ILR School. Download video workshop. This publication/presentation is by Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs,

Lead Programs Manager, Certified Industrial Hygienist, ILR Outreach Statewide And Buffalo Co-Lab, 617 Main St. – Suite 300, Buffalo, NY 14203, ILR School, Cornell University, t. 716 852 1444 x111,
njb7@cornell.edu, www.ilr.cornell.edu

7. Moderna: www.nowiknowcmv.com

8. Medscape, which offers free professional online education and CME (Continuing Medical Education) to physicians and healthcare professionals, is now working to advance awareness of congenital CMV. Gail J. Demmler-Harrison, MD can be seen introducing its new CMV program: “As chair of the steering committee, I’d like to welcome you to Clinical Advances in Cytomegalovirus or CMV, a comprehensive learning center for clinicians who treat patients with CMV or who treat patients who are at risk for CMV…” (medscape.org/sites/advances/cmv). Steering Committee members include Sallie Permar, MD, PhD; Amanda Devereaux, RN, BSN; Megan Pesch, MD, MS; Natali Aziz, MD, MS; and Nancy Durand, MD, FRCSC.(Series supported by an independent educational grant from Moderna, Inc.)

###

Since our country's goal is to follow the guidelines of organizations such as the CDC, American Academy of Pediatrics (AAP); American College of Obstetricians and Gynecologists (ACOG); and the Occupational Safety and Health Administration (OSHA), I thought I would compile a list of organizations that promote CMV prevention education:

American College of Obstetricians and Gynecologists (ACOG) - Under "What infections should I be concerned about and how can I reduce my chances of getting them during pregnancy", ACOG states, “CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection...(https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects ).
American Academy of Pediatrics (AAP) states: "Despite the magnitude of the problem as well as evidence for efficacy of preventive actions, awareness among women of childbearing potential is low..." (AAP, 2022). In its book, Caring for Our Children, AAP et al. feature: “The importance of hand hygiene measures (especially handwashing and avoiding contact with urine, saliva, and nasal secretions) to lower the risk of CMV; The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status. (AAP et al., nrckids.org/CFOC/Database/7.7.1.1, 2017). In addition, its book, Model Child Care Health Policies, includes a document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (AAP, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).
U.S. Congress: "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children"(https://www.congress.gov/bill/112th-congress/senate-resolution/215).
Centers for Disease Control and Prevention (CDC) - "People who have frequent contact with young children may be at greater risk of CMV infection because young children are a common source of CMV. " (https://www.cdc.gov/cmv/congenital-infection.html)
Occupational Safety and Health Administration (OSHA) recognizes CMV as a “hazard” for childcare workers (https://www.osha.gov/cytomegalovirus/hazards).
Moderna: "Moms-to-be should talk to their doctors about CMV and take precautions."
March of Dimes - "CMV often spreads during diaper changes, bathing and other close contact with babies and young children. Children can get infected with CMV at child care or school and pass it on to their families, caregivers and other children... CMV spreads easily in child care centers or preschools where children share toys that may carry CMV." (https://www.marchofdimes.org/complications/cytomegalovirus-and-pregnancy.aspx)
National CMV Foundation - "Cytomegalovirus, or CMV, is a public health issue... we support a policy agenda aimed at ensuring access to education for women of childbearing age, accelerating research funding, screening newborns for congenital CMV, and advocating for a vaccine. Congenital CMV infection is largely undetected because the majority of affected infants are asymptomatic at birth." https://www.nationalcmv.org/about-us/advocacy
National Association for the Education of Young Children and its document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”p.90.
ChildCare Aware of America: "if you are a childcare worker, a nursery volunteer, or have a toddler in child care, you need to know about cytomegalovirus (CMV)." (The Danger of Spreading CMV: How We Can Protect Our Children (June 2017).

NOTE 1

I have sent information similar to the above to organizations in the child care industry such as:

National Association for Family Childcare (NAFCC) is the group that supports and does accreditation for home based/family chilldcare businesses, www.nafcc.org
Zero to Three focuses on the development of babies and toddlers, especially social justice and equity work. www.zerotothree.org , and
Child Trends does independent research about childhood issues and has a newsletter. https://www.childtrends.org/
National Association for the Education of Young Children (NAEYC) is the group that does accreditation for childcare centers, https://www.naeyc.org/, naeyc@naeyc.org, woyc@naeyc.org

Why add cytomegalovirus (CMV) to the OSHA Bloodborne Pathogens Standard

2023-03-15T05:18:00.006-07:00

(Illustration from the Woodcutter's Tale by Marianne Greiner. Coloring by Suzanne Doukas Niermeyer)

Caregivers/teachers regularly bandage bloody cuts. Cytomegalovirus (CMV), the leading viral cause of birth defects, is transmitted through bodily fluids such as saliva, urine and blood.

I, along with others before me, have asked OSHA if they can add CMV to its bloodborne pathogens standard, because then, "employers having employees with exposure to blood or other potentially infectious materials (OPIM) must train employees annually regardless of the employees' prior training or education" (Standard Interpretations, 2007).

Despite OSHA recognizing CMV as a hazard to childcare workers on its webpage at: https://www.osha.gov/cytomegalovirus/hazards, I know from personal experience that most child care providers are unaware of their occupational risk for congenital CMV (www.cdc.gov/cmv/index.html).

Although I was a licensed, in-home child care provider at the time of my pregnancy with Elizabeth, born with congenital CMV in 1989, I was not educated about the virus. When I learned about CMV after receiving Elizabeth’s diagnosis, my head spun. I thought I lived in a country that told its workers about their occupational hazards. Elizabeth’s brain was small and damaged. She had deafness, blindness, mental challenges, cerebral palsy and epilepsy. She died during a seizure in 2006.

Shockingly, years later, child care providers are still unaware of CMV. In 2012, I received an email from a distressed grandmother about her grandson just born with congenital CMV. The baby's mother was a high school student interning in a daycare center. The young mother, just like me decades earlier, was unaware she was putting her pregnancy at increased risk by working with young children. When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why haven’t you launched an awareness campaign?" I explained to her that I've been trying for years--with little, long-term result.

Between 8 - 20% of child care providers contract CMV every year (American Academy of Pediatrics 2017) as compared to 1-4% of women (who have never had CMV) in the general population (CDC). Recent studies show that child care providers are largely unaware of CMV and many acknowledge using diaper wipes to clean (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014).

Most caregivers/teachers are still unaware of CMV because:

2) CMV education is not "part of standard prenatal care” (Washington Post, 2021);

3) Doctors don’t want to frighten, worry or “burden” patients (New York Times, 2016);

4) CMV is a “silent virus” that goes largely undiagnosed--"The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.” (Washing our hands of the congenital cytomegalovirus disease epidemic, Cannon and Davis, 2005).

It pains me that caregivers/teachers are slipping through the cracks--that their unborn children are not benefitting from the Occupational Safety and Health Act of 1970. Most workers in the childcare industry are not receiving their right to “receive information and training about hazards”. Their babies are paying the price for this neglect.

Please take a moment to "meet" these two mothers living near me who had no other children at the time of their pregnancy, but because of their professions, were unknowingly at increased risk for CMV. I met them at the June 2021 Cytomegalovirus Awareness Month event in central New York where we placed over 220 silver rocks (the color of CMV awareness) on the Trail of Hope (Buchiere, 2021) to honor the estimated number of babies born disabled by congenital CMV in New York each year. You can watch Autumn (born with congenital CMV in 2015), the beautiful daughter of Kristin Schuster of Canandaigua, "help" us with the rocks in the music video, "Had I Known (about CMV)". Autumn's mother, Kristin, stated that her "risk for contracting CMV came through her former job as a pre-kindergarten teacher when she was pregnant with her daughter Autumn" (Vallelunga, 2022). Jessica Keukelaar of Macedon watched us place the rocks with her first child Kyleigh, born with congenital CMV in 2018.

Like Kristin and myself, Jessica worked with young children during her pregnancy and was unaware of her occupational risk for CMV. In support of a New York law to educate child care providers about CMV, she wrote a letter to Assemblymember Rosenthal’s office stating, “I was a caregiver in a daycare center when I became pregnant with my daughter born with congenital cytomegalovirus (CMV)... I had never heard of CMV or the precautions to take. This bill [Elizabeth’s Law] is important to me because it came as a complete shock when my daughter was born full term, in 2018, with numerous urgent health issues due to CMV. She was transferred to a different hospital to be in the NICU where she spent the first two weeks of her life; she was very ill. My daughter has developmental delays, spastic cerebral palsy which affects her entire body, eating and digestive difficulties, progressive hearing loss, microcephaly, and more. Some of the extra equipment Kyleigh requires on a daily basis are, a wheelchair due to immobility, gastrostomy tube for proper nutrition, cochlear implant for hearing, and special orthotics for her hands, wrists, ankles, and feet. She had surgery for her cochlear implant at 17 months, a double hip reconstruction at two years, and surgery to have her g-tube placed at three years. She also takes numerous medications several times per day, and receives 11 Botox injections quarterly to help with her spasticity. Congenital CMV has affected every aspect of Kyleigh’s life, as well as our whole family. I wish that someone took the time to educate me about CMV since I was at an increased risk of infection ”( Jessica's Memo in Support of “Elizabeth’s Law” 2022).

In 2022, we three moms, former caregivers/teachers, helped New York pass the CMV education bill, "Elizabeth's Law", named in memory of my daughter. Although it is now required for child care providers to receive printed information about CMV (NYAssembly.gov, 2022), they are still not required to receive actual training on this recognized "hazard”. I think it's important to recognize the significance of this statement made in 2022: "Childcare workers, but not healthcare workers, have an increased risk of prevalent and incident CMV infection, a risk that is further increased with the presence of at least one child living at home. These findings suggest that enforcing simple, conventional hygienic measures in childcare settings could help reduce transmission of CMV, and that special precautionary measures for preventing CMV infection may not be required for pregnant healthcare workers."(Prevalence, incidence, and risk factors associated with cytomegalovirus infection in healthcare and childcare worker: a systematic review and meta-analysis, Balegamire et al.,2022)

OSHA's CMV Hazard Recognition page, https://www.osha.gov/cytomegalovirus/hazards, states, "To help prevent CMV infections, employers and workers should treat all body fluids as if they are potentially infectious with CMV and follow the precautions described in the Control and Prevention page. Depending on workers’ job tasks and exposures, this may include following universal precautions as required in OSHA's Bloodborne Pathogens (BBP) standard (29 CFR 1910.1030), as well as standard precautions, which expand universal precautions beyond what the BBP standard requires."

According to the OSHA webpage, Cytomegalovirus - Standards | Occupational Safety and Health Administration (osha.gov):

This section highlights OSHA standards and directives (instructions for compliance officers) and other related information that may apply to possible worker exposure to cytomegalovirus (CMV).

OSHA Standards

There is no specific OSHA standard covering CMV. However, there are some OSHA standards that may apply to preventing occupational exposure to sources of CMV.

OSHA's Personal Protective Equipment (PPE) standards (29 CFR 1910 Subpart I), which include requirements for when employees must use gloves and eye and face protection, may apply to protecting workers from CMV.
OSHA's Bloodborne Pathogens (BBP) standard (29 CFR 1910.1030) applies to occupational exposure to human blood and other potentially infectious materials. The BBP standard applies to occupational exposure to some human body fluids, including blood and saliva in dental procedures, which can transmit CMV. The BBP standard also describes measures could serve as a framework to control non-bloodborne exposures, including to body fluids such as urine, feces, and saliva (except in dental procedures) to which the standard does not apply.

Thank you for your attention to this serious matter.

Sincerely,

Lisa Saunders

LisaSaunders42@gmail.com

216 Peakwood Ln, Apt 15

Baldwinsville, NY 13027

Cytomegalovirus - Standards | Occupational Safety and Health Administration (osha.gov)

About Lisa's CMV work

Free Ways to Educate Pregnant Women About Preventing #1 Birth Defects Virus, CMV

2023-03-10T09:54:00.005-08:00

Cost of NOT preventing congenital CMV: "at least 3000 [newborns] are estimated to develop permanent neurologic disabilities each year due to cCMV infection...With an estimated annual cost of up to $4 billion in the United States, cCMV infection is an enormous public health concern..." ("Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection" (Gantt, S, 2016).

1) Ask the Commissioner of Health to upload the free CMV educational materials to the Department of Health Website. The CDC, AAP and Medscape have great materials. If materials are from the CDC, they don't seem to have to go through an approval process.

Medscape, which offers free professional online education and CME (Continuing Medical Education) to physicians and healthcare professionals, now works to advance awareness of congenital CMV. Gail J. Demmler-Harrison, MD can be seen introducing its new CMV program: “As chair of the steering committee, I’d like to welcome you to Clinical Advances in Cytomegalovirus or CMV, a comprehensive learning center for clinicians who treat patients with CMV or who treat patients who are at risk for CMV…” (medscape.org/sites/advances/cmv). Dr. Demmler-Harrison told Saunders, “This is just the first of many CME educational programs Medscape has planned. Check back often for new programs!"

2) Ask legislators to ask doctors who provide prenatal care to distribute information about CMV prevention (CT DPH website has letter: “About CMV For Obstetric Health Care Providers”. It needs to be written in statute, similar to Iowa law, “An attending health care provider shall provide to a pregnant woman during the first trimester of the pregnancy the informational materials published under this subsection. The center for congenital and inherited disorders shall make the informational materials available to attending health care providers upon request.

3) Distribute links to fliers to doctors and child care providers through association newsletters.

4) Ask student interns to create materials especially for child care providers. Although the CT DPH has info for child care providers (see: https://portal.ct.gov/DPH/Family-Health/EHDI/CMV), it doesn't have a flyer specifically for child care providers.

I asked CT DPH:

As you may be aware, the Cytomegalovirus education bill is now Raised H.B. No. 6821: AN ACT

CONCERNING EDUCATION REGARDING CYTOMEGALOVIRUS, which only requires CMV info on the DPH website. Commissioner of Health, Manisha Juthani, MD, stated in her letter of testimony: "DPH currently maintains a website, portal.ct.gov/DPH/Family-Health/EHDI/CMV, that provides information on symptoms, diagnosis, and treatment of cytomegalovirus. We are happy to work with practitioners and community providers if they would like additional information on cytomegalovirus to be added to the website..."

3/06/2023 Juthani, Manisha, Commissioner-Department of Public Health-

Commissioner of Health, Manisha Juthani, MD, dph.commissioner@ct.gov

ADD:

UCONN students created a CMV training video for child care providers.

CMV Training Module for child care providers (University of Connecticut):https://youtu.be/k9MFAEYVuLs
CDC flyers in English and Spanish:https://www.cdc.gov/cmv/resources/pregnant-women-parents.html
Recommendations from the AAP for caregivers/teachers at:http://nrckids.org/CFOC/Database/7.7.1.1. "Staff Education and Policies on Cytomegalovirus (CMV)," American Academy of Pediatrics, American Public Health Association, National Resource Center for Health and Safety in Child Care and Early Education. (Revised 2017). National Health and Safety Performance Standards: Guidelines for Early Care and Education Programs. Retrieved from Caring for Our Children

CT DPH currently have this for child care providers:

For Childcare Providers and Pediatrics Professionals:

Due to frequent contact with young children, childcare providers and other pediatric professionals, may be at greater risk for CMV. According to the National CMV Foundation, “Contact with infected bodily fluids, including saliva or urine of young children, is a major cause of CMV infection among pregnant women – especially mothers, daycare workers, preschool teachers, therapists, and nurses. Studies in childcare settings suggest that as many as 75% of toddler-aged children have CMV in their urine or saliva, and viable CMV can persist on hands for at least 15 minutes.” Following standard hygiene practices mentioned above may help prevent the spread of CMV.

*)Ask CDC to include child care workers on its list of occupations affected by bloodborne pathogens since they bandage up cuts/scrapes: https://www.cdc.gov/niosh/topics/bbp/occupations.html.

"Under OSHA's bloodborne pathogens standard, employers having employees with exposure to blood or other potentially infectious materials (OPIM) must train employees annually regardless of the employees' prior training or education" (Standard Interpretations, 2007). I, and others, have contacted OSHA, asking them to put CMV on their official bloodborne pathogen list, because then it means that child care providers across the country will receive training in CMV.

CMV info should be a part of bloodborne pathogens/universal precautions training for child care providers since they must bandage cuts and handle blood. Their CMV Hazard Recognition page indicates rationale for why it could be included, yet it is not a requirement: https://www.osha.gov/cytomegalovirus/hazards

OSHA's Personal Protective Equipment (PPE) standards (29 CFR 1910 Subpart I), which include requirements for when employees must use gloves and eye and face protection, may apply to protecting workers from CMV.
OSHA's Bloodborne Pathogens (BBP) standard (29 CFR 1910.1030) applies to occupational exposure to human blood and other potentially infectious materials. The BBP standard applies to occupational exposure to some human body fluids, including blood and saliva in dental procedures, which can transmit CMV. The BBP standard also describes measures could serve as a framework to control non-bloodborne exposures, including to body fluids such as urine, feces, and saliva (except in dental procedures) to which the standard does not apply.

*) I just asked the Red Cross the following: Thank you for your information on cytomegalovirus

(CMV) at: https://www.redcrossblood.org/local-homepage/news/article/why-cmv-negative-blood-is-so-important.html#:~:text=CMV%20is%20contagious

I understand that blood-collecting folks tell donors WHY they are happy if a donor is CMV-negative. Is there any way you can help provide more information, like handing out a flier to everyone about CMV, not to just those who are negative?

Women of childbearing age are not told about CMV, the leading viral cause of birth defects. As you may be aware, 1 in 200 babies is born with congenital CMV (my daughter was one of them and lived for 16 years with a severely damaged brain).

Here is an excerpt from a recent article that illustrates what I'm talking about: "One afternoon, a technician looked at my blood-donor card and pointed out the three letters with a minus sign typed on the bottom right. "How wonderful!" he said. "Your blood can be donated to preemies!" It meant I'd never contracted CMV...I was proud that my blood could help newborns — but looking back, I wish I'd understood that it also meant I should try to avoid CMV if I ever became pregnant. Eventually, my son was on the receiving end of those blood donations because of challenges that had been preventable."
"My son was born sick from a virus he caught in utero. He's now 10 and has several disabilities" JACLYN GREENBERG,
March 7, 2023: https://africa.businessinsider.com/health/my-son-was-born-sick-from-a-virus-he-caught-in-utero-hes-now-10-and-has-several/5bfd2v3

*) Find one catchy phrase to get out on social media, such as "don't share you pacifier", etc., to get it as known as the kitty litter virus (even though toxoplasmosis is contracted other ways, the kitty litter thing at least gets one thinking about it). Examples: #ReduceYourRisk, Save pregnancy from CMV, etc

Newborns with symptomatic and asymptomatic congenital cytomegalovirus (CMV)

2023-03-02T02:51:00.003-08:00

I am not a doctor, so I collected fliers, web content and opinions to consider:

FROM THE NATIONAL CMV FOUNDATION:

Next Steps After a CMV Diagnosis

MINNESOTA

Minnesota now tests ALL newborns for CMV and makes the following recommendations for those diagnosed with congenital CMV: Congenital Cytomegalovirus--Overview

https://www.health.state.mn.us/people/newbornscreening/program/cmv/index.html

Congenital Cytomegalovirus Frequently Asked Questions

Families

Providers

For submitters

Information specific for families:

https://www.health.state.mn.us/people/newbornscreening/program/cmv/faq.html

OPINIONS FROM EXPERTS

1) Asymptomatic congenital cytomegalovirus (CMV)

"If an infant is known to have passed the newborn hearing screen but has tested positive for CMV, the most recent JCIH [Joint Committee on Infant Hearing] statement recommends a full pediatric audiology evaluation by 3 months of age and then future monitoring “every 12 months to age 3 or at shorter intervals based on parent/provider concerns," stated Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Connecticut Chapter Champion (CMV - An often unknown cause of hearing loss, 2019).

Another opinion: Dr. Gail Demmler-Harrison said, "I actually suggest every 6 months for 3 years, then annually thereafter, or soon if concerns" (Feb. 2023)

2) Symptomatic congenital cytomegalovirus (CMV)

General opinion relevant to any state: "A newborn or infant diagnosed with congenital CMV infection should be seen/evaluated/consulted by an expert in pediatric infectious diseases. These experts may be found at most children's hospitals and major medical centers. While most babies with congenital CMV infection have no symptoms, and will not experiencer long term consequences, some infants do have disease and sequelae from congenital CMV, so it is important to have the baby fully evaluated as early as possible, to see if they meet criteria for antiviral treatment and/or special monitoring. All babies, whether symptoms or not, are at risk for hearing loss, and this hearing should always be monitored carefully in all babies born with congenital CMV infection. Hearing can be monitored by a pediatric audiologist or a pediatric otolaryngologist/ENT specialist, or the baby's pediatrician."

Including children with known congenital CMV in New York

2023-02-11T06:09:00.001-08:00

Page 116 - Model Child Care Health Policies, published by the American Academy of Pediatrics, recommends staff members acknowledge and accept “Occupational Risk” of working in child care “including infections that can damage a fetus during pregnancy”

NEW LAW IN NEW YORK

Did you know about the new law aimed at educating child care providers and pregnant women about cytomegalovirus (CMV), the leading viral cause of birth defects?

I am a CMV advocate (but not a doctor). However, I and can help direct you to more information. If you don't know what congenital CMV is, or about the new law named "Elizabeth's Law," in memory of my daughter, I suggest reading:

NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
The Post-Standard: "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", Emma Vallelunga, Jan.1, 2023, Syracuse.com, Dec. 27, 2022 (Facebook).
CNYCentral.com:”Baldwinsville mom celebrates new law in daughter's name to protect pregnant women, babies”, Megan Coleman, Dec.15, 2022 (Facebook).

Once child care providers learn about CMV, their increased risk and need to carefully follow infection control policies, or learn there is a known case of congenital CMV in their group, they may be wondering if they should work with that child.

According to the National CMV Foundation: "Precautions for Caregivers: Contact with infected bodily fluids, including saliva or urine of young children, is a major cause of CMV infection among pregnant women – especially mothers, daycare workers, preschool teachers, therapists, and nurses. Studies in childcare settings suggest that as many as 75% of toddler-aged children have cmv in their urine or saliva, and viable CMV can persist on hands for at least 15 minutes. Per the AAPs 2015 Red Book recommendations for CMV, which states that healthcare workers, even when pregnant, do not need to exclude children with CMV, as up to 80% of asymptomatic children are shedding CMV at any time. Universal precautions are enough to minimize exposure." Learn more at: https://www.nationalcmv.org/resources/for-childcare-providers and/or see their flier, "Should I Exclude a Child Born With CMV?"

Caregivers/teachers should be referred to their primary care doctor or health department for counseling about their risk of CMV infection per the guidelines in Caring for Our Children: 7.7.1.1: Staff Education and Policies on Cytomegalovirus (CMV), which states:

Cytomegalovirus (CMV) is a viral infection that is common in children. Up to 70% of children ages 1 to 3 years in group care settings excrete the virus (1).
Staff of childbearing age who care for infants and children should be provided the following information:

The increased probability of exposure to cytomegalovirus (CMV) in the child care setting;
The potential for fetal damage when CMV is acquired during pregnancy;
The importance of hand hygiene measures (especially handwashing and avoiding contact with urine, saliva, and nasal secretions) to lower the risk of CMV;
The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status.

Female employees of childbearing age should be referred to their primary health care provider or to the health department authority for counseling about their risk of CMV infection. This counseling may include testing for serum antibodies to CMV to determine the employee’s immunity against CMV infection.
Since saliva can transmit CMV, staff should be advised not to share cups or eating utensils, kiss children on the lips, or allow children to put their fingers or hands in another person’s mouth.

RATIONALE

CMV is the leading cause of congenital infection in the United State and approximately 1% of live born infants are infected prenatally (1). While most infected fetuses likely escape resulting illness or disability, 10% to 20% may have hearing loss, developmental delay, cerebral palsy, or vision disturbances (1). Although maternal immunity does not entirely prevent congenital CMV infection, evidence indicates that acquisition of CMV during pregnancy (primary maternal infection) carries the greatest risk for resulting illness or disability of the fetus (2).

Children enrolled in child care facilities are more likely to acquire CMV than are children cared for at home (2). Epidemiologic data, as well as laboratory testing of viral strains, has provided evidence for child-to-child transmission of CMV in the child care setting (1). Rates of CMV excretion vary among facilities and between class groups within a facility. Children between one and three years of age have the highest rates of excretion; published studies report excretion rates between 30% and 40% (2). Many children excrete CMV asymptomatically and intermittently for years.

With regard to child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20% (2). The increased risk for exposure to CMV and high rates of acquisition of CMV in caregivers/teachers could lead to increased rates of congenital CMV infection. Meticulous hand hygiene can reduce the rates of infection by preventing CMV transmission. With current knowledge on the risk of CMV infection in child care staff members and the potential consequences of gestational CMV infection, child care staff members should receive counseling in regard to the risks of acquiring CMV from their primary health care provider. However, it is also important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy (1).

COMMENTS

For additional information regarding CMV, consult the CMV chapter in the current edition of the Red Book from the American Academy of Pediatrics (AAP).

TYPE OF FACILITY

Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

RELATED STANDARDS

3.6.1.1 Inclusion/Exclusion/Dismissal of Ill Children

REFERENCES

Aronson, S. S., T. R. Shope, eds. 2017. Managing infectious diseases in child care and schools: A quick reference guide, 4th Edition.Elk Grove Village, IL: American Academy of Pediatrics.
American Academy of Pediatrics. Cytomegalovirus (CMV) Infection In: Kimberlin DW, Brady MT, Jackson MA, Long SS, eds. Red Book: 2018 Report of the Committee on Infectious Diseases. 31st Edition. Itasca, IL: American Academy of Pediatrics; 2018: 310-317

NOTES

Content in the STANDARD was modified on 3/31/17.

(Visit: https://nrckids.org/CFOC/Database/7.7.1.1)

Child care licensing agencies should instruct child care centers and preschools to educate staff about CMV. The book, Model Child Care Health Policies, has a sample document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (American Academy of Pediatrics, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).

NOTE:

Although I know personally of one lawsuit settled out of court in the US (so there is no record of it), I do know of these published cases involving what can happen if women are not educated about their CMV risks:

1) Connecticut: Lawsuit featured in the article, "Couple wins $37.6 million in Superior Court ruling against UConn Health for fertility procedure that left one child dead and her twin requiring lifetime medical attention", which included the comment, “The Center for Advanced Reproductive Services did not inform Monroe-Lynch and 'knowledgeably obtain her consent' about the risks associated with a CMV infection, according to the lawsuit” (Hartford Courant, 2021). The lawyers' website states, “The devastating consequences of contracting congenital CMV infection early in pregnancy are well-known in the medical community. There are simple safeguards in place to protect prospective parents and their children from this horrible disease” (Walsh Woodard LLC, 2021).

2) Australia: ”A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's Services 2002)” (WorkSafe). Lawyers commented, “The allegations of negligence were that Sydney Day Nursery breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women…”(Meridian Lawyers).

Effectiveness of CMV Prevention Education

2023-02-10T06:02:00.001-08:00

Five CVM prevention education studies published between 1993 and 2015 were analyzed in article, “Prevention of Maternal–Fetal Transmission of Cytomegalovirus,” where Dr. Stuart Adler states: “In each report, the efficacy of hygienic precautions has been > 75%...For seronegative pregnant women who are at high risk because of exposure to a young child in the home or in large group childcare, hygienic precautions are simple, inexpensive, and highly effective.” (Adler, 2015: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4588411/)
New York Times summarized a 2004 study: “pregnant mothers shown a video and offered hygiene tips were much less likely to get CMV (5.9 percent) than those not given information on prevention (41.7 percent). (CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed, Saint Louis, OCT. 24, 2016)
The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices” (NY Dept. of Health). “Nurses and nursing students who practice good personal hygiene are no more likely to acquire CMV than their peers in the community.” (“Cytomegalovirus is not an occupational risk for nurses in renal transplant and neontal units. Results of a prospective surveillance study”, National Library of Medicine, 1986)
COVID -19 pandemic has reduced cases of congenital CMV! "The study found that in the five-year period leading up to the pandemic, about one baby in every 200 births was born with CMV. Between August 2020 and December 2021, the number deacreased to one baby in every 1,000 births…Researchers concluded that the combination of strict hygienic precautions, stay-at-home practices and, most importantly, the closure of child care and group day care centers all resulted in reduced transmission of the CMV virus to children and their mothers during the pandemic.” Study: Number of babies born with cytomegalovirus decreased during the COVID-19 pandemic, University of Minnesota, Sept. 6, 2022. Note: Minnesota is the first to state to test ALL newborns for CMV.
“The Role of Prenatal Counseling in Preventing Congenital CMV” analyzes CMV education controversy ( VANESSA COLLERAN, 2020).

See bibliography for more

Adler, S.P., et al., Prevention of child-to-mother transmission of cytomegalovirus by changing behaviors: a randomized controlled trial. Pediatr Infect Dis J, 1996. 15(3): p. 240-6.(https://pubmed.ncbi.nlm.nih.gov/8852913/)

Adler, S. P., Finney, J. W., Manganello, A. M., & Best, A. M. (2004). Prevention of child-to-mother transmission of cytomegalovirus among pregnant women.J Pediatr, 145(4), 485-491.(https://pubmed.ncbi.nlm.nih.gov/15480372/)

Bate, S.L. and M.J. Cannon, A social marketing approach to building a behavioral intervention for congenital cytomegalovirus. Health Promot Pract, 2011. 12(3): p. 349-60.(https://journals.sagepub.com/doi/10.1177/1524839909336329)

Cannon, M.J., et al., Awareness of and behaviors related to child-to-mother transmission of cytomegalovirus. Prev Med, 2012. 54(5): p. 351-7. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4494733/)

Cannon, M.J. and K.F. Davis, Washing our hands of the congenital cytomegalovirus disease epidemic. BMC Public Health, 2005. 5: p. 70. (https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-5-70)

Finney, J.W., K.M. Miller, and S.P. Adler, Changing protective and risky behaviors to prevent child-to-parent transmission of cytomegalovirus. J Appl Behav Anal, 1993. 26(4): p. 471-2. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297873/)

Harvey, J., & Dennis, C. L. (2008). Hygiene interventions for prevention of cytomegalovirus infection among childbearing women: systematic review. J Adv Nurs, 63(5), 440-450.(https://pubmed.ncbi.nlm.nih.gov/18727745/)

Hughes, B. L., K. M. Gans, C. Raker, E. R. Hipolito, and D. J. Rouse. "A Brief Prenatal Intervention of Behavioral Change to Reduce the Risk of Maternal Cytomegalovirus: A Randomized Controlled Trial." Obstet Gynecol 130, no. 4 (Oct 2017) (https://pubmed.ncbi.nlm.nih.gov/28885428/)

Jeon, J., et al. Knowledge and awareness of congenital cytomegalovirus among women. Infect Dis Obstet Gynecol, 2006. 2006: p. 80383. (https://pubmed.ncbi.nlm.nih.gov/17485810/)

Levis, D. M., Hillard, C. L., Price, S. M., Reed-Gross, E., Bonilla, E., Amin, M., . . . Cannon, M. J. (2017). Using theory-based messages to motivate U.S. pregnant women to prevent cytomegalovirus infection: results from formative research. BMC Womens Health, 17(1), 131. (https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-017-0482-z)

MMWR (2008) Knowledge and practices of obstetricians and gynecologists regarding cytomegalovirus infection during pregnancy--United States, 2007.MMWR Morb Mortal Wkly Rep, 2008. 57(3): p. 65-8.(https://pubmed.ncbi.nlm.nih.gov/18219267/)

Price, S. M., Bonilla, E., Zador, P., Levis, D. M., Kilgo, C. L., & Cannon, M. J. (2014). Educating women about congenital cytomegalovirus: assessment of health education materials through a web-based survey. BMC Womens Health, 14, 144. (https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-014-0144-3) From abstract: "To increase awareness of CMV, the Centers for Disease Control and Prevention (CDC) developed draft health education materials. The purpose of this study was to pilot test two health education materials to gauge their appeal and to determine if they increase knowledge about CMV and motivate audiences to seek additional information on CMV and adopt CMV prevention behaviors." From results: "CMV knowledge score increased significantly after presentation of either the video or factsheet (from 3.7 out of 10 to 9.1 out of 10, p <0.001)...From conclusion: "Overall, we found that the health education materials improved women’s knowledge of CMV and encouraged them to adopt prevention behaviors. Given the low awareness levels among women currently, these findings suggest that appropriate education materials have the potential to greatly increase knowledge of CMV."

Revello, M. G., Tibaldi, C., Masuelli, G., Frisina, V., Sacchi, A., Furione, M., . . . for the, C. S. G. (2015). Prevention of Primary Cytomegalovirus Infection in Pregnancy(). EBioMedicine, 2(9), 1205-1210.doi:10.1016/j.ebiom.2015.08.003 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4588434/)

Ross, D.S., et al., Women's knowledge of congenital cytomegalovirus: results from the 2005 HealthStyles survey. J Womens Health (Larchmt), 2008. 17(5): p. 849-58. (https://www.liebertpub.com/doi/abs/10.1089/jwh.2007.0523)

Thackeray, R., B.M. Magnusson, and E.M. Christensen, Effectiveness of message framing on women's intention to perform cytomegalovirus prevention behaviors: a cross-sectional study. BMC Womens Health, 2017. 17(1): p. 134. (https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-017-0492-x)

Thackeray, R. and B.M. Magnusson, Women's attitudes toward practicing cytomegalovirus prevention behaviors. Prev Med Rep, 2016. 4: p. 517-524. (https://pubmed.ncbi.nlm.nih.gov/27747148/)

Vauloup-Fellous, C., Picone, O., Cordier, A. G., Parent-du-Chatelet, I., Senat, M. V., Frydman, R., & Grangeot-Keros, L. (2009). Does hygiene counseling have an impact on the rate of CMV primary infection during pregnancy? Results of a 3-year prospective study in a French hospital. J Clin Virol, 46 Suppl 4, S49-53. doi:10.1016/j.jcv.2009.09.003 (https://pubmed.ncbi.nlm.nih.gov/19811947/#:~:text=Conclusions%3A%20These%20results%20suggest%20that,following%20counseling%20than%20before%20counseling.)

New York: Test every newborn for CMV: Universal Screening and possible intervention for all!

2023-01-05T03:52:00.004-08:00

Lisa Saunders and her husband Jim , a recently retired Pfizer scientist, leave behind #Stop CMV rocks as they walk across New York State on the Erie Canalway Trail. Their daughter Elizabeth (1989-2006) was born with brain damage from congenital CMV. Tabitha Rodenhaus of Buffalo paints these rocks to honor daughter Kaia born with congenital CMV in 2016. Lisa says, "My husband and I are placing these rocks along the 360-mile Erie Canalway Trail as we walk across the state between Albany and Buffalo. These rocks are meant to honor the children lost to CMV and to remind us of the work still ahead to ensure all newborns are protected from CMV through prevention or by receiving the proper treatment at birth. As of today, Jim and I have walked 189 miles—more than halfway across the State of New York."

Elizabeth Saunders born with congenital cytomegalovirus (CMV) in 1989. Mother Lisa Saunders, a New York resident, asks that all newborns be tested for CMV.

IMMEDIATE RELEASE

Lisa Saunders

Baldwinsville, NY

https://www.audiology.org/practice-guideline/american-academy-of-audiology-position-statement-on-early-identification-of-cytomegalovirus-in-newborns/

About Lisa's CMV work

New York State Passed "Elizabeth's Law' to protect babies from Cytomegalovirus (CMV),

#1 birth defects virus

Next goal: Universal testing--test ALL newborns for CMV

"Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV" (Cannon and Davis, "Washing our hands of the congenital cytomegalovirus disease epidemic, 2005).

On November 28, 2022, the governor signed "Elizabeth's Law" (A7560B/S6287C) to ensure pregnant women and child care providers get information on preventing the leading viral cause of birth defects, cytomegalovirus (CMV). Lisa Saunders of Baldwinsville, mother of Elizabeth (1989-2006), says she is thrilled that New York women will finally have a chance to learn how to protect their pregnancies from CMV. A child care provider when pregnant with Elizabeth, Lisa says, "Women who have or care for toddlers are at higher risk for contracting CMV." Racial and ethnic minorities are also at higher risk for CMV: "Cytomegalovirus (CMV) is the most common infectious cause of fetal malformations and childhood hearing loss. CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities" (Geographic Disparities in Cytomegalovirus Infection During Pregnancy, Lantos et al, 2017).

According to the CDC, one in 200 babies born with congenital CMV (cCMV). Approximately 20% of babies born with cCMV will suffer long-term health problems such as hearing and vision loss, developmental delays and cerebral palsy. CMV "is a common virus that infects people of all ages. Most people infected with CMV show no signs or symptoms. When a baby is born with cytomegalovirus infection, it is called congenital CMV and may cause brain, liver, spleen, lung, and growth problems. The most common long-term issue is hearing loss, which may be present at birth or develop later in childhood (CDC, 2019). Congenital CMV can also cause visual impairments, including strabismus, cortical visual impairment, nystagmus, and optic nerve atrophy" (Causes of Deaf-Blindness, National Center on Deaf-Blindness).

"CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children,” stated Sunil K. Sood, M.D., Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children's Medical Center and Professor, Zucker School of Medicine at Hofstra/Northwell (NYMetroParents, 2016). Dr. Sood’s efforts to prevent the consequences of congenital CMV include co-authorship of a study “Valganciclovir for symptomatic congenital cytomegalovirus disease”, 2015, and his newborn CMV screening program at Northwell Health has become a model for the State of New York.

As a result of Elizabeth's Law, “Expectant parents and caregivers of New York will be empowered to prevent the transmission of congenital CMV, the leading infectious cause of birth defects and infant brain damage, because of this legislation. Assemblymember Rosenthal's leadership, and the support of her colleagues in the Legislature, on this important public health issue will help ensure all infants have a healthy start to life,” said Dr. Sallie Permar, Chair of the Department of Pediatrics at Weill Cornell Medicine and Pediatrician-in-Chief at New York-Presbyterian/Weill Cornell Medical and New York-Presbyterian Komansky Children's Hospital. (NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” Nov. 2022)

Kelly Smolar Gerne of Brooklyn, a mechanical engineer and mother of Alexis, born 2020, says Alexis is thriving because she was diagnosed and treated early following a failed newborn hearing test. “While I am angry about the lack of CMV education prior and during my pregnancy, the CMV testing law passed in 2018 meant our family was the recipient of those who had fought before us. I want to continue that forward so all babies in the State of New York will have the option for early intervention."

The targeted CMV testing law passed in 2018 was also spearheaded by Assemblymember Rosenthal. When she read the 2016 New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed", she felt that something had to be done.

In 2023, Assemblymember Linda B. Rosenthal is seeking to amend the 2018 CMV law, which requires that newborns showing a hearing loss be tested for CMV, to requiring all newborns be tested for CMV. (In 2022, Minnesota became the first state to pass legislation requiring every newborn be tested for CMV.)

Joseph Domachowske, MD, "professor of pediatrics, microbiology and immunology with a specialty in pediatric infectious diseases at SUNY Upstate Medical University," said, "not all congenitally infected babies have hearing loss at birth, and most babies born with CMV can be asymptomatic, so the best way to diagnose CMV early involves prevention education and better forms of testing. 'Hearing tests are somewhat helpful, but it’s not the best answer, and it’s not the best way to handle this,' Domachowske said. “What’s coming down the pike is adding CMV to universal newborn screening panels, and having that test done will be very specific for CMV” (Post-Standard, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", Emma Vallelunga, Jan.1, 2023, Facebook post).

Kristin Schuster of Canandaigua, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old--well after the opportunity had passed to receive treatment most effective when given between ages zero to six months. She was not diagnosed with congenital CMV at birth despite failing her newborn hearing screen multiple times, having 'low for gestational age' birth weight, and microcephaly. Autumn received her first pair of hearing aids for bilateral severe hearing loss at 4 months old, glasses for vision impairment at 5 months, an MRI showing brain calcifications, very significant global delays, and received a g-tube for feeding at 15 months of age. Up until then, all of the doctors and specialists we were seeing claimed that her diagnoses were 'unrelated.' It wasn't until I read an article about CMV posted in a Facebook group for Rochester parents of children with hearing loss that I had that 'aha' moment that congenital CMV must be the root cause of all of my daughter's difficulties. When I requested to have her tested for CMV, I was initially given pushback, but when I demanded her newborn blood spot be tested, her neurologist arranged to have it tested from where it was banked in Albany. When the test came back, we finally had our confirmed diagnosis of congenital CMV--too late for her to receive treatment in the optimal first months of life."

Despite being more common than many of the diseases tested in New York's newborn screening process, cCMV is not one of the 50 different disorders screened. Newborn screening "refers to medical tests...performed to identify babies with certain disorders, which without intervention, may permanently impact newborns and their families" (New York State Newborn Screening Program, Department of Health, Wadsworth Center).

In 2022, the NY Department of Health, Wadsworth Center, announced: "the New York State Newborn Screening Program was recently awarded a contract from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to provisionally add congenital Cytomegalovirus (cCMV) to our screening panel. All babies will be tested for this infection." (NY DPH, 2022).

Anyone who would like to learn more about the New York CMV laws can contact Assemblymember Linda B. Rosenthal’s office at 518/455-5802 or Nick Guile, Legislative Director for Assemblymember Rosenthal, at guilen@nyassembly.gov.

For more information, the CDC has CMV fliers available in English and Spanish.

###

In an effort to continue raising awareness of CMV, Lisa Saunders and her husband Jim, a recently retired Pfizer scientist, leave behind #Stop CMV rocks as they walk across New York State between Albany and Buffalo on the 360-mile Erie Canalway Trail. Lisa says, "As of November 2022, Jim and I have walked 189 miles, which is 53% across the State of New York. We walk in all kinds of weather, which means we've been chased by mosquitoes, biting flies, lightning, torrential downpours and blinding snow. We’ve confronted snakes, floods, slippery ice, chafing underwear, aching feet, swollen knees, and a desperate need to find a bathroom. But it's all worth it if our walk brings attention to CMV!"

Brandi Hurtubise of Buffalo, New York National CMV Foundation Alliance Chair, can be reached at nationalcmvny@gmail.com or visit: nationalcmv.org. Brandi said, "My daughter Samantha will never walk or talk independently because of a virus no one told me about. No one told me I shouldn't share drinks or food with my toddler while I was pregnant with my daughter. Or that I needed to wash my hands after every single diaper change. That I needed to be cautious of his saliva and urine because it could be carrying a virus that would harm my unborn baby. I didn't know because CMV isn't commonly talked about or educated on; even though it is more common than Down Syndrome" (NYAssembly.gov, November 2022). Brandi can be reached at nationalcmvny@gmail.com or visit: nationalcmv.org. (Lisa Saunders interviewed Brandi on local access TV: CytoMegaloVirus (CMV) - What Moms Wished They Knew, PAC-B TV, 2021).

Additional quotes and information:

To review the case for Universal CMV Screening, which includes a Q. and A., such as who pays for the test, visit: CMVmass.org/screen/.

"The American Academy of Audiology recommends early identification of congenital cytomegalovirus (cCMV) through screening to allow for appropriate early diagnosis, intervention, and monitoring for congenital, progressive, and delayed-onset hearing loss in infants with cCMV."

The National CMV Foundation states, "More children live with disabilities due to congenital CMV than other well-known infections and syndromes, including: Down syndrome, fetal alcohol syndrome, spina bifida, pediatric HIV/AIDS, toxoplasmosis, and Zika – yet less than ten percent of women know about CMV." The non-profit organization recommends that "congenital CMV to be added to the Recommended Uniform Screening Panel (RUSP), national recommendations that guide and support states in the development of their newborn screening programs. Screening every child for CMV at birth opens the door for early intervention, therapeutic support, the very best developmental outcomes possible" (Nominate congenital cytomegalovirus (CMV) for uniform newborn screening, 2019).

The CDC states, "Hearing loss may progress from mild to severe during the first two years of life, which is a critical period for language learning. Over time, hearing loss can affect your child’s ability to develop communication, language, and social skills. Babies who show signs of congenital CMV disease can be treated with medicines called antivirals. Antivirals may decrease the severity of hearing loss" (https://www.cdc.gov/cmv/hearing-loss.html).

Children born with symptomatic congenital CMV can be treated if diagnosed early. “Infants congenitally infected with CMV may benefit from antiviral therapy, especially if treatment is initiated within the first month of life,” states Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry (www.uptodate.com/contents/congenital-cytomegalovirus-infection-management-and-outcome).

Susanne Morgan Morrow, MA, CI, CT, Project Director, New York Deaf-Blind Collaborative (NYDBC), said ,"It is critical that children with dual sensory loss be identified as early as possible for a myriad of reasons. Research shows that children with compromised hearing and vision require the most direct interventions in order to develop concepts and to have access to language that is in the most suitable modality to their experience. Families are often extremely overwhelmed with the knowledge of this new diagnosis and need to get connected to resources and experts who can provide appropriate assessments."

Jacqueline Augustine, President of Hands & Voices of NY, a non-profit for families with deaf and hard of hearing children, said, "Early screening and detection for CMV is essential to ensuring children and families are given the necessary resources, follow-up and medical interventions needed for their development. Many children go misdiagnosed. Parents also do not know that CMV is possible to be contracted in-utero. More education is also needed for parents prior to birth. Screening and early detection combined with prenatal CMV education is paramount."

"We concluded that there is good evidence of potential benefit from nonpharmaceutical interventions for children with delayed hearing loss that occurs by 9 months of age. Similarly, we concluded that there is fair evidence of potential benefit from antiviral therapy for children with hearing loss at birth and from nonpharmaceutical interventions for children with delayed hearing loss occurring between 9 and 24 months of age and for children with CMV-related cognitive deficits...Overall, we estimated that in the United States, several thousand children with congenital CMV could benefit each year from newborn CMV screening, early detection, and interventions" ("Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?", Cannon et al., 2014).

Marcia Fort, AuD, CCC-A, representing the Board of Directors of the Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA), wrote a letter to the Advisory Committee on Heritable Disorders in Newborns and Children in support of nominating congenital CMV infection for consideration by the Committee for the RUSP: "Failure to diagnose the cCMV infection can lead to a delayed diagnosis of hearing loss, impacting the child's language development and educational progression" (National CMV Foundation, "Nominate congenital cytomegalovirus (CMV) for uniform newborn screening", 2019, Application).

William C. Gruber, M.D., FAAP, FIDSA, Senior Vice President of Pfizer Vaccine Clinical Research and Development, also wrote a letter to the Advisory Committee on Heritable Disorders in Newborns and Children in support of nominating congenital CMV infection for RUSP. He stated, "In the absence of a vaccine to prevent the disease, prompt diagnosis and valganciclovir treatment of symptomatic congenital CMV infection has been associated with improved audiologic outcomes and neurodevelopmental outcomes; prompt diagnosis would facilitate early identification of hearing loss so that other interventions could also be applied early to facilitate hearing and child development. In addition, routine screening would better identify the burden of the disease that could be prevented by a vaccine, facilitating vaccine development and recommendations" (p.279, Application).

Dr. Roy D. Baynes of Merck wrote in his letter of support for congenital CMV infection for review as part of RUSP: "Beyond hearing loss which can sometimes appear years after birth, other health problems can include vision loss, intellectual disability, seizure, and more...Evidence suggests that newborn screening is cost-effective under a wide set of assumptions and universal screening offers a larger savings opportunity and the opportunity to direct care" (p.266, Application).

###

On November 28, 2022, the governor signed "Elizabeth's Law" (A7560B/S6287C), named in memory of my daughter, to ensure pregnant women and child care providers get information on preventing the leading viral cause of birth defects, cytomegalovirus (CMV).

Please see these press releases from the sponsors of the bill, plus my own that follows:

NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.

To learn more about the pilot study commencing in 2023, visit www.wadsworth.org/newborn,. Mischa Sogut, Assistant Commissioner for Government Relations, NYS Department of Health, said, "the Newborn Screening Program is currently under contract to test all newborns for CMV in dried blood spots for a period of one year (~221,000 babies) in order to determine if this test is suitable for newborn screening... "(Mischa.Sogut@health.ny.gov)

Angela Cote of Buffalo appreciates the 2018 targeted CMV testing law, also spearheaded Assemblymember Rosenthal, because it led to the quick diagnosis of why Elise, born in 2019, failed her newborn hearing test, giving her access to early intervention, but Angela wishes she had known about CMV before her pregnancy. She told Lisa Saunders in a public access TV interview how shocked she was by the diagnosis. She couldn’t believe she had never heard of CMV, especially since she was surrounded by young children as a nanny and the mother of a toddler ("CytoMegaloVirus (CMV) - What Moms Wished They Knew," PAC-B TV, 2021).

Federal Law: Please help ALL women of childbearing receive information about congenital CMV

2022-12-29T10:06:00.001-08:00

Can you help get a country-wide law requiring congenital cytomegalovirus (CMV) prevention education? According to the CDC, "CMV is the most common infectious cause of birth defects in the United States. About 1 out of 200 babies is born with congenital CMV. One out of 5 babies with congenital CMV will have symptoms or long-term health problems, such as hearing loss" (CDC.gov/CMV).

I do have some good news in regard to the State of New York working to prevent congenital CMV. "Elizabeth's Law" (A7560B/S6287C), named in memory of my daughter, was signed by the governor on November 28, 2022 (our story: "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", Syracuse.com, 2022). The new law requires the provision of CMV information to child care providers and women at their first prenatal visit.

Press releases from the sponsors of the bill:

NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.

Though I'm delighted about New York's new CMV education law, I'm still very concerned that most women of child bearing age in the U.S. do not know about CMV, or the steps to take to reduce their chances of contracting it before getting pregnant. Regarding congenital CMV, the American Academy of Pediatrics (AAP) states: "Despite the magnitude of the problem as well as evidence for efficacy of preventive actions, awareness among women of childbearing potential is low..." (AAP, 2022).

Congenital CMV causes miscarriage, stillbirths, low birth weight, infant mortality, and disabilities such as deafness, blindness, mental challenges, and/or cerebral palsy. Three months prior to my pregnancy with Elizabeth, who was born with congenital CMV in 1989, I had a miscarriage. It is certainly possible that I was infected with CMV then, but I wasn't aware that I should be tested for it and/or perhaps waited to get pregnant again. Women who have a young child in group care or work in childcare are at greater risk for CMV as are racial and ethnic minorities (Geographic Disparities in Cytomegalovirus Infection During Pregnancy, 2017).

Will you help us expand New York's CMV education law to the rest of the United States? According to the National CMV Foundation, the following states already require the state to educate the public and professionals about congenital CMV: Colorado, Hawaii , Idaho, Illinois, Iowa, Kentucky, Minnesota, Nebraska, New York, Oregon, Texas and Utah.

Since nearly half of pregnancies are unplanned, I am hoping that cytomegalovirus (CMV) prevention education, such as not sharing cups with toddlers, will be made available from health professional to their patients and added to places such as the CDC webpage "Unintended Pregnancy" under the topic, "Preconception Health Promotion".

Since our country's goal is to follow the guidelines of organizations such as the American Academy of Pediatrics (AAP); American College of Obstetricians and Gynecologists (ACOG); and the Occupational Safety and Health Administration (OSHA), I thought I would compile a list of organizations that promote CMV prevention education:

American College of Obstetricians and Gynecologists (ACOG) - Under "What infections should I be concerned about and how can I reduce my chances of getting them during pregnancy", ACOG states, “CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection...(https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects ).
American Academy of Pediatrics (AAP) states: "Despite the magnitude of the problem as well as evidence for efficacy of preventive actions, awareness among women of childbearing potential is low..." (AAP, 2022). In its book, Caring for Our Children, AAP et al. feature: “The importance of hand hygiene measures (especially handwashing and avoiding contact with urine, saliva, and nasal secretions) to lower the risk of CMV; The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status. (AAP et al., nrckids.org/CFOC/Database/7.7.1.1, 2017). In addition, its book, Model Child Care Health Policies, includes a document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (AAP, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).
U.S. Congress: "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children"(https://www.congress.gov/bill/112th-congress/senate-resolution/215).
Centers for Disease Control and Prevention (CDC) - "People who have frequent contact with young children may be at greater risk of CMV infection because young children are a common source of CMV. " (https://www.cdc.gov/cmv/congenital-infection.html)
Occupational Safety and Health Administration (OSHA) recognizes CMV as a “hazard” for childcare workers (https://www.osha.gov/cytomegalovirus/hazards).
Moderna: "Moms-to-be should talk to their doctors about CMV and take precautions."
March of Dimes - "CMV often spreads during diaper changes, bathing and other close contact with babies and young children. Children can get infected with CMV at child care or school and pass it on to their families, caregivers and other children... CMV spreads easily in child care centers or preschools where children share toys that may carry CMV." (https://www.marchofdimes.org/complications/cytomegalovirus-and-pregnancy.aspx)
National CMV Foundation - "Cytomegalovirus, or CMV, is a public health issue... we support a policy agenda aimed at ensuring access to education for women of childbearing age, accelerating research funding, screening newborns for congenital CMV, and advocating for a vaccine. Congenital CMV infection is largely undetected because the majority of affected infants are asymptomatic at birth." https://www.nationalcmv.org/about-us/advocacy
National Association for the Education of Young Children and its document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”p.90.
ChildCare Aware of America: "if you are a childcare worker, a nursery volunteer, or have a toddler in child care, you need to know about cytomegalovirus (CMV)." (The Danger of Spreading CMV: How We Can Protect Our Children (June 2017).
Congenital CMV Disease Research Clinic & Registry - "Our mission is to provide continuous research on the biology, epidemiology, clinical manifestations, methods to diagnose treatment and prevention of congenital CMV disease as well as to raise public awareness of the life-long impact it may have. We also strive to improve the quality of life of children through prevention of disease by providing community resources and a parent support worldwide network." Dr. Gail J. Demmler Harrison
Group B Strep International: "Are you pregnant or plan to be and have a toddler in group care or work/volunteer in early childhood education or daycare? If you don’t know about your increased exposure to cytomegalovirus (CMV), you should."
MotherToBaby.org: "Close contact with children less than three years old, such as in daycare settings, is a common way to become infected with CMV."

To analyze the conclusions of several CMV prevention education studies, I recommend reading, “The Role of Prenatal Counseling in Preventing Congenital CMV,” which states, "There is a substantial amount of evidence that pregnant women can reduce their risk of transmission through simple behavioral changes... " - Vanessa Colleran, The Massachusetts Congenital CMV Coalition, 2020.

Thank you for your time.

Sincerely,

Lisa Saunders

Baldwinsville, NY