Congenital CMV (cytomegalovirus)

Those Who Can't Be Home for Christmas

2011-11-22T07:13:00.000-08:00

Elizabeth and I when she was about three

While sipping coffee and paying bills at Starbucks in Mystic, CT, tears sprang when I heard the song that gets me every year--"I'll Be Home For Christmas."

As usual, I cried for the people I miss, but six years ago, I remember crying in thankfulness that our younger daughter, Elizabeth, managed to be home for yet another Christmas.

Expecting Elizabeth, due to arrive Christmas Eve of 1989, had been an exciting experience. But the moment she was born on December 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 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.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When “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 could not speak or hold up her head, Elizabeth was very happy and loved going for long car rides--especially to look at Christmas lights. She also enjoyed 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 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, as I prepare to celebrate my sixth Christmas without her, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, old rescue dog Riley, and watch us decorate. Now, I perform one 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!”

Now, I only visit with Elizabeth in my dreams, but to feel her presence on a more continuous basis, I share her life with others. After speaking about her at the first international Congenital CMV conference held at the Centers for Disease Control in Prevention (CDC) in Atlanta, GA, 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 memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's couch while including CMV prevention and treatment tips from the country’s leading CMV experts. The first chapter is available for viewing in Amazon’s e-book version at: www.amazon.com/dp/B005GRAE0I

When I asked the CDC what else I could do to help raise a CMV prevention message, I was told about a woman who might be able to advise me--Marti Perhach. Marti, a Pomona, CA, mother, lost her own daughter Rose in 1998, and along with other grieving parents, is successfully waging a campaign to raise awareness and prevent Group B Strep (GBS) disease in babies before birth through early infancy. When I told Marti that I thought it took guts to post a photo of her dead daughter on her website, she said, "But that is the only picture I have of Rose."

According to Marti, "Rose had a healthy fetal heartbeat moments before the OB stripped my membranes even though I had cultured positive for GBS. Rose was stillborn the next morning as GBS had infected her lungs and amniotic fluid. Some experts believe that invasive procedures push GBS closer to the baby where it is known to cross even intact membranes."

Marti believes that if the public works together, we can inspire a change in awareness and OB/GYN protocol that will save children from congenital CMV, the #1 viral cause of birth defects, as well as several other infections the CDC wishes to prevent.*

To help children come home for Christmas, hand out the CDC's fact sheet on preventing infections during pregnancy available at: http://www.cdc.gov/ncbddd/pregnancy_gateway/infections.html

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*End Note:

Anything But a Dog! raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry link at: http://www.unlimitedpublishing.com/cmv/

Now, due largely due to the collective efforts of Marti and many other parents through the Jesse Cause Foundation and the Group B Strep Association, OB/GYN's routinely test their patients for this bacteria prior to giving birth. Because much works still needs to be done to prevent GBS disease in babies before birth through early infancy, Marti co-founded Group B Strep International: http://www.groupbstrepinternational.org/

Janelle Greenlee of Sunnyvale, California, is another mother working hard to prevent infection –related disabilities in future children. The mother of twin sisters, Riley and Rachel, who were born disabled because Janelle caught cytomegalovirus (CMV), said, "We hope that women, families and friends will become familiar with the CMV virus and will take vigilant steps to prevent infection. We believe that it is better for women and their families to learn about CMV well prior to pregnancy so that they will never have to learn of it when it is too late." Janelle founded Stop CMV - The CMV Action Network: www.stopcmv.org

True Story of Lazy, Homeless Dog and Lonely, Little Girl Now an E-Book

2011-08-26T04:05:00.000-07:00

Book includes how to prevent #1 birth defects virus

Mystic, CT---The publisher of "Anything But a Dog!" is now making the true story of a lazy, homeless dog and a lonely, little girl available as an e-book on Amazon.com. See Chapter One by clicking on the book’s image at: http://www.amazon.com/dp/B005GRAE0I

"Anything But a Dog! The perfect pet for a girl with congenital CMV," is a mother’s humorous and moving search for one pet to suit two very different daughters--one a tomboy, the other mentally and physically disabled from the # 1 birth defects virus, congenital CMV (cytomegalovirus).

Author and mother, Lisa Saunders, says “no” to her daughter Jackie’s pleas for a dog, fearing it will be too rambunctious around Jackie’s disabled little sister Elizabeth. But she does make her a promise she thinks will never come to pass: “If God brings a dog to our door, then you can have it.” In the meantime, the family wrestles with a series of dysfunctional pets: a flesh-eating hamster, an attack cat, killer ants and a very smelly rabbit. Then one day, the unexpected happens: a shivering, dirty puppy shows up at their door. But is this dog really Heaven-sent?

Published by Unlimited Publishing LLC in 2009, "Anything But a Dog!" includes the latest news on how to prevent the far-reaching but under-reported effects of congenital CMV, the #1 viral cause of birth defects--more common a cause of disabilities than Down syndrome. Women who care for young children are at greatest risk and need to practice caution around toddler saliva (by avoiding kissing them around the mouth and through careful hand-washing).

Saunders’ interview on USA 9 News: http://www.wusa9.com/video/default.aspx?bctid=34235723001

Reviews:

"If you're an animal lover, you'll love the critter tales as much as the special-needs storyline." Terri Mauro, About.com

“Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge." Tonia Shakespeare, Rockland Magazine

“A hilarious set of pet tales! Lisa has given us yet another funny, tender tale of family life.” Dr. Elisabeth Schafer, author of Vegetable Desserts: Beyond Carrot Cake and Pumpkin Pie

About Lisa Saunders

Lisa Saunders currently lives in Mystic, CT, with her husband and beagle/basset hound. She the Congenital CMV Foundation parent representative, and in addition to Anything But a Dog!, is the author of Ever True: A Union Private and His Wife and Ride a Horse, Not an Elevator. See her work at: http://www.authorlisasaunders.com/

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Learn more about Congenital CMV:

Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/cmv/index.html

Saunders’ blog: http://congenitalcmv.blogspot.com/

Lisa Saunders Discussing Anything But a Dog!:
http://www.youtube.com/user/LisaSaundersCom?feature=mhee#p/u/14/ludkrnq9vTQ

Other reviews of Anything But a Dog!

"I just loved it! An entertaining yet honest look at what it's like to raise a child with disabilities."- Janelle Greenlee,.stopcmv.org, mother of twin daughters Riley and Rachel, born with Congenial CMV

"Saunders weaves laughter and tears, congenital CMV education and the challenges of raising two daughters – one a tomboy and the other severely disabled." Deborah J. Botti, Times Herald Record

"I congratulate Lisa on producing a very good piece of work," says Gail J Demmler-Harrison, MD, Director of the Congenital CMV Disease Registry and Research Program, Baylor College of Medicine.

“A mother of a daughter born with severe disabilities uses humor to candidly relate experiences of acceptance and daily hardships with the people and pets forever changed by her child’s life. The book also contains resources, contacts and support for anyone whose life is touched by CMV (congenital cytomegalovirus.)” Joni and Friends

Having walked the same road, I've lived Lisa's feelings and stories and ultimately shared the same unshakeable and deep, deep love a mother has for her CMV child." Tracy McGinnis, Founder of the Brendan B. McGinnis Congenital CMV Foundation and mother of Brendan born with congenital CMV

“A remarkable story, told in a way that is powerful and unforgettable. The dialogue is delightful! It's almost impossible to end a book in a truly satisfying way, but Lisa has succeeded 100%. I have a pregnant friend who works at a preschool and daycare facility who definitely needs to know about congenital CMV. I plan to print out some information for her immediately.” Krista Niles, Graduate Student, University of Chicago

"I read this straight through in one sitting and loved it! It was moving—and funny! The appendages about congenital CMV contain such valuable information, and the addendums are very moving. This book is an incredible contribution." Mary Goodin, M.A., Educator

Why did my daughter die?

2011-06-23T13:48:00.000-07:00

by Lisa Saunders

Why did my daughter die? Because I didn't know about congenital CMV (cytomegalovirus) prevention.

Today is Congenital CMV Awareness Day and June is Congenital CMV Awareness Month. Perhaps this new attempt at a prevention message will help other children enjoy a healthier childhood.

Expecting our second child, due to arrive Christmas Eve of 1989, had been an exciting experience. What a Christmas present! But the moment Elizabeth was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small–so deformed.

The neonatologist declared, "Your daughter has profound 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) — a virus that may have no symptoms for the mother.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome. 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. Hands must be washed after wiping runny noses, diaper changes, etc. 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 also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

“My life is over,” I thought. I asked God to heal her instantly, but He didn’t. So, I begged him to kill me and prayed to be crushed to death in an earthquake. I just couldn’t handle raising such an afflicted child, period.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish. Life did become good again--but it took a lot of help from Jim, family, friends, the Book of Psalms, and a couple of Valium! When Elizabeth finally figured out how to look into my eyes, she smiled—and I was hooked.

On Elizaeth's 16th birthday, I awoke feeling so proud of her. How hard she fought to remain with us in the land of the living–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 big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy young lady with a love of adventure-- long car rides being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children.

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. We called 911.”

The medical team did all they could, but she was gone. While holding Elizabeth 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 Elizabeth did.” I knew he was right. No one adored us as Elizabeth did.

Thank you for reading about Elizabeth.

Sincerely,

Lisa Saunders, Mystic, CT

P.S. In an effort to record the fun I had raising Elizabeth beside her tomboy sister, Jackie, I wrote the book, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It is the unusual story of how a homeless, old dog found his way to Elizabeth's couch. The book concludes with tips for preventing congenital CMV from the country’s leading CMV experts and gives information on emerging treatments for women who find they have contracted CMV while pregnant. Available through the National Congenital Disease Registry, “Anything But a Dog!” raises funds for congenital CMV parent support and research if purchased through: http://www.unlimitedpublishing.com/cmv/

To see photos of Elizabeth growing up, please visit my website at: http://www.authorlisasaunders.com/

Stop CMV From Hurting Your Baby

2011-06-07T04:38:00.000-07:00

Yesterday, the Centers for Disease Control and Prevention (CDC) highlighted how to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), on their homepage. According to the CDC, "In the U.S. more children have disabilities due to congenital cytomegalovirus (CMV) infection than other conditions present at birth."

I hope the CDC's work toward reducing congenital CMV will encourage OB/GYNs to make CMV prevention a part of their standard practice of care so women of child-bearing age will know how to reduce their chances of contracting it—namely by not sharing utensils with young children or kissing them around the mouth, and through careful hand-washing.

I didn’t know about CMV prevention until my daughter, Elizabeth, was born severely disabled by the virus in 1989. Though a happy little girl, Elizabeth had cerebral palsy and epilepsy, and was mentally, visually and hearing impaired. She died in 2006 at the age of 16 during a seizure. Elizabeth was profoundly affected by CMV, but other children's symptoms aren't so severe--but that doesn't remove the anguish of mothers who didn't know about CMV prevention until it was too late for their child.

When I spoke at the international 2008 Congenital CMV Conference at the CDC in Atlanta, GA, mothers came up to me afterwards with their children in wheelchairs or wearing hearing aids, and asked, “Why didn’t my OB/GYN warn me how to protect my baby from CMV?”

In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.”

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV, according to the study, "Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007."

According to a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

To reduce chances of contracting congenital CMV, women of childbearing age should:
· Refrain from kissing children around the mouth--give them a big hug and a kiss on the top of the head instead.
· Refrain from sharing food and utensils with others, especially children.
· Wash hands diligently with soap and water after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

Lenore Pereira, PhD, Founder of the Congenital Cytomegalovirus Foundation, University of California, San Francisco, said, “Ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease.”

In an effort to raise a congenital CMV prevention message, I wrote a light-hearted memoir about raising my daughter Elizabeth alongside her big, tomboy sister and a series of dysfunctional pets. It includes the unusual story of how a 100-pound, homeless dog found his way to Elizabeth’s couch plus interviews with the country’s leading CMV experts who speak about CMV prevention and emerging treatments. Anything But a Dog! The perfect pet for a girl with congenital CMV raises funds for CMV research and parent support at the National Congenital CMV Disease Registry if purchased through this link.

For more information about congenital CMV or how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, and the Director of the Congenital CMV Disease Registry, Clinic and Research Program. The Registry, located in Houston, TX, supports CMV research, disseminates information and provides a parent support group. Phone: (832) 824-4387.

To learn more about my daughter's life with CMV, her dog, and CMV prevention, see my television interview on USA 9 News.

How you can help stop CMV:
1. Print out the brochures and flyers found on the CDC website and at Stop CMV--The Action Network. Ask your doctors to post them on their walls or hand them out. The Stop CMV--the Action Network website has CMV awareness flyers available in several languages. Click here for the English one.

2. Write letters to the editors of magazines, your local newspapers and broadcast media (my Congenital CMV blog includes samples).

The next International Conference on Congenital CMV will be held in San Francisco, CA, in 2012.

Annual Christmas Message

2011-01-21T03:59:00.000-08:00

Every year on December 18, I wake up in our home decorated for Christmas and think, "My little Elizabeth was born today." As I enter the living room and see the stockings "hung with care" and the empty chair placed beside the fireplace, I know I can't get through the day without e-mailing my thoughts to new friends, the media, and to anyone I think will listen to me. This year, this is what arrived in people's inboxes at 7:27 a.m.:

Elizabeth: A Christmas Blessing–Even Now
by
Lisa Saunders

Expecting our second child, due to arrive Christmas Eve of 1989, had been an exciting experience. What a Christmas present! But the moment Elizabeth was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small–so deformed.

The neonatologist declared, "Your daughter has profound 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) — a virus that may have no symptoms for the mother.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome. 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. Hands must be washed after wiping runny noses, diaper changes, etc. 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 also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

“My life is over,” I thought. I asked God to heal her instantly, but He didn’t. So, I begged him to kill me and prayed to be crushed to death in an earthquake. I just couldn’t handle raising such an afflicted child, period.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish. Life did become good again--but it took a lot of help from Jim, family, friends, the Book of Psalms, and a couple of Valium! When Elizabeth finally figured out how to look into my eyes, she smiled—and I was hooked. Like George Bailey standing on the bridge in the movie, “It’s a Wonderful Life,” I too cried, “I want to live again!”

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. Listening to nostalgic songs like, “I’ll be home for Christmas,” I thought about how hard she fought to be home with us for another Christmas–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 big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy young lady with a love of adventure-- long car rides to look at Christmas lights being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought that like Rudolph the Red-Nosed Reindeer, 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. We called 911.”

The medical team did all they could, but she was gone. While holding Elizabeth 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 Elizabeth did.” I knew he was right. No one adored us as Elizabeth did.

Now, as I prepare to celebrate my fifth Christmas without her, it is with some heartache that I lift the holiday decorations from their boxes. Elizabeth used to love to sit on the couch with her big, old dog Riley, and watch me decorate.

I have found a way, however, to still include Elizabeth in our Christmas traditions. Every year, I unfold the black and red checked shirt she wore on her last day and hang it over an empty chair beside our fireplace. She is forever my “Tiny Tim” who would say to us if she could, “God bless us, everyone!”

Thank you for reading about Elizabeth.

Sincerely,

Lisa Saunders, Mystic, CT

P.S. In an effort to record the fun I had raising Elizabeth beside her tomboy sister, Jackie, I wrote the book, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It is the unusual story of how a homeless, old dog found his way to Elizabeth's couch. The book concludes with tips for preventing congenital CMV from the country’s leading CMV experts and gives information on emerging treatments for women who find they have contracted CMV while pregnant. Available through the National Congenital Disease Registry, “Anything But a Dog!” raises funds for congenital CMV parent support and research if purchased through: http://www.unlimitedpublishing.com/cmv/ To see photos of Elizabeth growing up, please visit my website at: www.authorlisasaunders.com

June Designated Congenital CMV Awareness Month

2010-06-06T05:51:00.000-07:00

IMMEDIATE RELEASE
June 7, 2010
Lisa Saunders
Parent Representative:
Congenital CMV Foundation
and Stop CMV
Contact: saundersbooks@aol.com

June Designated Congenital CMV Awareness Month

Public can prevent #1 birth defects virus--more common than Down syndrome

Suffern, NY--June has been designated National Congenital CMV (cytomegalovirus) Awareness Month by Stop CMV--The CMV Action Network in conjunction with the U.S. Dept. of Health and Human Services in an effort to teach women of child-bearing age how to prevent the leading viral cause of birth defects, which causes more disabilities than Down syndrome. Month-long nationwide events will culminate with Congenital CMV Awareness Day at the Centers for Disease and Prevention (CDC) on June 29.

According to the CDC (www.cdc.gov/cmv). :
• Every hour, congenital CMV (cytomegalovirus) causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV

Examples of permanent symptoms or disabilities caused by congenital CMV:

Hearing loss
Vision loss
Mental disability
Small head
Lack of coordination
Seizures
Death

The CDC in Atlanta, Georgia, is holding a Congenital CMV Awareness Day on June 29. Presenters include Janelle Greenlee, President/Founder of Stop CMV--The CMV Action Network and mother of twin girls born with congenital CMV; Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program; Dr. Bob Pass, Pediatrician & Research, University of Alabama at Birmingham; Shanna Boot, mother of a son born with congenital CMV; and Michael J. Cannon, Ph.D., Research Epidemiologist, CDC. For more information about the event, which is sponsored by the Prevention Research Branch of the Division of Birth Defects and Developmental Disabilities at the CDC, e-mail: mcannon@cdc.gov

Lisa Saunders of Suffern, N.Y., didn’t know about CMV prevention until her daughter, Elizabeth, was born severely disabled by the virus in 1989. Elizabeth had cerebral palsy, epilepsy, and was mentally, visually and hearing impaired. Saunders, author of memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” which includes emerging treatment information and raises funds for CMV research (if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv), spoke at the international 2008 Congenital CMV Conference at the CDC. She said, “Mothers at the conference were coming up to me after my speech with their children in wheelchairs or wearing hearing aids, and asked, ‘Why didn’t my OB/GYN warn me how to protect my baby from CMV?’”

In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” authors Drs. Cannon and Davis state: “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.”

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV.

According to a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

To reduce chances of contracting congenital CMV, women of childbearing age should:
· Refrain from kissing children around the mouth--give them a big hug and a kiss on the top of the head instead.
· Refrain from sharing food and utensils with others, especially children.
· Wash hands diligently with soap and water after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

Lenore Pereira, PhD, Founder of the Congenital CMV Foundation, University of California, San Francisco, said, “Ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease.”

For more information about congenital CMV and how you can protect your pregnancy, contact Dr. Demmler-Harrison at gjdemmle@texaschildrenshospital.orgor visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387. A good booklet, which includes comments on prenatal blood tests, is found at: http://www.bcm.edu/web/pediatrics/documents/CMV_Brochure_eng.pdf

How you can help stop congenital CMV:

Visit Stop CMV at http://www.stopcmv.org/ print the comprehensive one-page flyer at www.stopcmv.org/flyers.php Ask your doctors and friends to post the flyers and/or hand out. Since 2003, Stop CMV has been working to foster congenital CMV awareness via Internet and public awareness campaigns. They post several simple ways you can help raise awareness.

For more information about the press release, contact Lisa Saunders, Representative of Stop CMV and the Congenital CMV Foundation, at saundersbooks@aol.com or see her work to prevent congenital CMV at: http://congenitalcmv.blogspot.com/ Saunders will be speaking at the 2010 Congenital CMV Conference held in Paris, France, in September: http://www.congenitalcmv2010.org/

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Additional Information:

TV coverage, articles and studies:

Lisa Saunders interviewed on USA 9 News about her daughter's life with CMV: http://www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28

Article about Lisa Saunders' work to raise CMV awareness,which includes advice from internationally known CMV experts, in Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Soap and water prevents birth defects: http://www.parentguidenews.com/Catalog/SpecialNeeds/SoapandWater/

To see slides of Elizabeth Saunders, born with congenital CMV, visit Lisa Saunders' PowerPoint presentation at http://webcast.streamlogics.com.edgesuite.net/customer/conf-plus/siemens/2010Apr20/auditorium/resources/Lisa%20Saunders%20Presentation.pdf or register in order to hear her present the PowerPoint at: http://www.meetme.net/torch

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm2006

PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Fit Pregnancy Magazine article quoting an OB/GYN on why CMV prevention isn't discussed(June/July 2008 issue): Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

CMV CDC site: http://www.cdc.gov/cmv/Charts showing prevalence of congenital CMV and women’s knowledge of it: http://www.cdc.gov/Features/dsCytomegalovirus/This CDC link includes congenital CMV podcasts http://www.cdc.gov/Features/Cytomegalovirus/

Pregnant and have an active CMV infection?

Contact an expert at the Texas Children’s Hospital Fetal Center for advice. For contact information, visit http://www.texaschildrens.org/CareCenters/fetalsurgery/default.aspx
Also contact the National Congenital CMV Disease Registry at cmv@bcm.edu or visit: www.bcm.edu/pedi/infect/cmv

Treatment:
There have been recent breakthroughs in helping unborn children if their mothers become infected with CMV. Treatment of CMV infected women with intravenous CMV hyperimmune globulin is showing promising results. More information can be found in the article, “Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection,” by Giovanni Nigro, M.D., Stuart P. Adler, M.D., Renato La Torre, M.D., Al M. Best, Ph.D., (originally published in The New England Journal of Medicine on September 29, 2005).Some children born with congenital CMV are being treated with ganciclovir. The CDC states: "There is some evidence that ganciclovir, an antiviral drug, may prevent hearing loss in infants born with congenital CMV. However, this drug has serious side effects and was only tested in children with severe congenital CMV symptoms. If your child has symptoms of congenital CMV, you should consult with your doctor to decide whether to try treatment."

Scientific papers on CMV stats and emerging treatments, see: http://www.congenitalcmv.org/research.htm The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

Your Child Disabled by CMV?

Contact other CMV parents for advice or simply “chat” at: http://listserv.syr.edu/scripts/wa.exe?A0=cmv

Join the STOP CMV Action Network and read each other’s stories at: http://www.stopcmv.org/

Contact Dr. Demmler-Harrison at gjdemmle@texaschildrenshospital.orgor visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

4/10 Lecture: Stop CMV--#1 Birth Defects Virus

2010-03-25T03:48:00.000-07:00

Author Lectures on #1 Birth Defects Virus—More Common Than Down Syndrome

"What you don't know could hurt your unborn baby"

Hawthorne, N.J.--Author and mother of child disabled by congenital CMV discusses how to prevent the #1 viral cause of birth defects, which causes more disabilities than Down syndrome.

Saturday, April 10, 1 p.m.
“Stop CMV--#1 Birth Defects Virus”
Presented by Lisa Saunders,
Congenital CMV Foundation and STOP CMV representative
Location: Louis Bay 2nd Public Library, Hawthorne, N.J.
Admission: Free

Few women have heard of congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome, and more than half of OB/GYNs surveyed admitted they don't warn their patients about it. Lisa Saunders of Suffern, N.Y., will discuss how to protect unborn children from CMV as well as other germs that cause birth-defects.

Saunders didn’t know about CMV prevention until her daughter, Elizabeth, was born severely disabled by the virus in 1989. Elizabeth had cerebral palsy, epilepsy, and was mentally, visually and hearing impaired.

Saunders, author of memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” spoke at the Centers for Disease Control and Prevention (CDC) in Atlanta, G.A., at the international 2008 Congenital CMV Conference. She said, “Mothers at the conference were coming up to me after my speech, with their children in wheelchairs or wearing hearing aids, and asked, ‘Why didn’t my OB/GYN warn me how to protect my baby from CMV?’”

In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.

According to the CDC, in the U.S.:

• Every hour, congenital CMV causes one child to become disabled

• Each year, about 30,000 children are born with congenital CMV infection• About 1 in 750 children is born with or develops permanent disabilities due to CMV

• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

Saunders is a full-time writer for the State University of New York at Rockland and is a member if its Speakers Bureau. She is also the Congenital CMV Foundation parent representative and a STOP CMV area rep. To learn more about her work to stop CMV, visit: http://congenitalcmv.blogspot.com/ For more information about the lecture, contact Clara Caldarone, Program Coordinator, at ccaldaronelb2@optonline.net, (973) 427-5745 x 11, or visit: http://hawthorne.bccls.org/

Please Stop CMV--#1 Birth Defects Virus

2010-02-23T02:49:00.000-08:00

Stop CMV--#1 Birth Defects Virus

The moment I gave birth to my daughter Elizabeth in December of 1989, I felt a stab of fear—her head was so small, so deformed. Within 12 hours, I was told she had been profoundly disabled by congenital CMV (cytomegalovirus). The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right.

How and why did I catch this virus that I had barely heard of? According the Centers for Disease Control and Prevention (CDC), congenital CMV is the #1 viral cause of birth defects--causing more disabilities than Down syndrome. CMV is spread through bodily fluids such as saliva and urine. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. (Nurses do not seem to be in the risk category because they practice diligent hand-washing and aren’t kissing their patients around the mouth or sharing utensils with them.) While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

I took about a year, but with the help of friends and family, prescription sedatives, and the Book of Psalms, I was able to accept Elizabeth’s disabilities and love her the way she was. Our family moved forward as a happy one.

Sixteen years after Elizabeth’s birth, I awoke on her birthday feeling so proud of her. She had fought hard to stay with us, surviving several bouts of pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.

Two months after her 16th birthday, Elizabeth died suddenly during a seizure. Holding her body in his arms and looking into her lifeless eyes, my husband, Jim, cried, "No one is ever going to look at me again the way Elizabeth did." Now our girl would be forever "sweet sixteen."

Back in 1989, when I was pregnant with Elizabeth, my OB/GYN hadn't warned me about CMV or how to prevent it--and much to my anguish, in 2010, they still don't.

When I spoke at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life with CMV, mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

One OB/GYN was quoted in FitPregnancy magazine (June/July '08) as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” Others simply don’t realize the prevalence of congenital CMV.

In their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.

”More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV despite these figures from the CDC:
• Every hour, congenital CMV causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

Examples of symptoms or disabilities caused by congenital CMV:

Temporary Symptoms
Liver problems
Spleen problems
Jaundice (yellow skin and eyes)
Purple skin splotches
Lung problems
Small size at birth
Seizures

Permanent Symptoms or Disabilities
Hearing loss
Vision loss
Mental disability
Small head
Lack of coordination
Seizures
Death

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

Reduce Chances of Contracting CMV:
· Refrain from kissing children around the mouth--give them a big hug and a kiss on the top of the head instead.
· Refrain from sharing food and utensils with others, especially children.
· Wash your hands diligently with soap and water after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital. Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”

What I do to Stop CMV:

•Elizabeth’s big sister, Jackie Saunders, summarized my work to Stop CMV on my congenital CMV blog: http://congenitalcmv.blogspot.com/ I also:
•Write to magazine/newspaper editors asking if they’d like to feature CMV
•Write to producers about my/others willingness to speak on T.V. about CMV
•Write letters to elected officials asking for a CMV education campaign
•Published free e-book, How to Get Published, to make available an excerpt of Anything But a Dog! The perfect pet for a girl with congenital CMV
•Run “Open Mike Nights” to read aloud my CMV prevention articles
•Use Youtube. Twitter, Facebook, and LinkedIn to raise awareness.
•Submit articles about CMV to newspapers/online publications
•Post CMV info on social networking sites like momslikeme.com
•Offer myself and others as public speakers on CMV. My PowerPoint includes photos of Elizabeth: http://docs.google.com/present/edit?id=0AdKlfxar2CmjZGdjcjZienZfOTBkZjNmejZmeA&hl=en
•Add my voice to CMV parents and the general public at: http://www.stopcmv.org/
•My book, Anything But a Dog! raises CMV awareness and funds for the National Congenital CMV Disease Registry if purchased through their site.

How you can help stop CMV:
1. Print out the brochures and flyers found on CDC Web pages and at http://www.stopcmv.org/ and ask your doctors to post them on their walls and/or hand out. http://stopcmv.org/images/stopcmvnewflyer.pdf

2. Write letters to the editors of magazines, your local newspapers and broadcast media (my CMV blog includes samples at: http://congenitalcmv.blogspot.com/2009/09/cmv-parents-send-letter-to-media.html and http://congenitalcmv.blogspot.com/2009/04/letter-to-tv-producers-about-cmv.html)

3. Write letters to your elected officials asking them to promote an educational campaign (my CMV blog includes a sample: http://congenitalcmv.blogspot.com/2009/04/prevent-1-birth-defects-virus.html).

4. Donate to an organization that supports CMV research, disseminates information and provides a parent support group, by contacting the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv

5. In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog ! The perfect pet for a girl with congenital CMV.” It includes interviews with the country's leading CMV experts and raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv Some have purchased copies to donate to their local libraries in order to raise CMV awareness in their area.

CMV Sources of Information:

CMV CDC site: http://www.cdc.gov/cmv/
Charts showing prevalence of congenital CMV and women’s knowledge of it: http://www.cdc.gov/Features/dsCytomegalovirus/
This CDC link includes congenital CMV podcasts http://www.cdc.gov/Features/Cytomegalovirus/

The STOP CMV parent action network: http://www.stopcmv.org/
(has a good, one-page flyer for posting in offices at: http://stopcmv.org/images/stopcmvnewflyer.pdf)

Good basic booklet available on CMV (includes comments on prenatal blood tests)
http://www.bcm.edu/web/pediatrics/documents/CMV_Brochure_eng.pdf

Articles and Studies:
To read about my CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Fit Pregnancy Magazine article quoting an OB/GYN on why CMV prevention isn't discussed(June/July 2008 issue): Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org
or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

Pregnant and have an active CMV infection?
Contact an expert at the Texas Children’s Hospital Fetal Center for advice. For contact information, visit http://www.texaschildrens.org/CareCenters/fetalsurgery/default.aspx
Also contact the National Congenital CMV Disease Registry at cmv@bcm.edu or visit: www.bcm.edu/pedi/infect/cmv

Treatment:

There have been recent breakthroughs in helping unborn children if their mothers become infected with CMV. Treatment of CMV infected women with intravenous CMV hyperimmune globulin is showing promising results. More information can be found in the article, “Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection,” by Giovanni Nigro, M.D., Stuart P. Adler, M.D., Renato La Torre, M.D., Al M. Best, Ph.D., (originally published in The New England Journal of Medicine on September 29, 2005).

Some children born with congenital CMV are being treated with ganciclovir. The CDC states: "There is some evidence that ganciclovir, an antiviral drug, may prevent hearing loss in infants born with congenital CMV. However, this drug has serious side effects and was only tested in children with severe congenital CMV symptoms. If your child has symptoms of congenital CMV, you should consult with your doctor to decide whether to try treatment."

For scientific papers on CMV stats and emerging treatments, see: http://www.congenitalcmv.org/research.htm

Your Child Disable by CMV?

Contact other CMV parents for advice or simply “chat” at: http://listserv.syr.edu/scripts/wa.exe?A0=cmv

Join the STOP CMV Action Network and read each other’s stories at: http://www.stopcmv.org/

Compiled by:

Lisa Saunders
http://www.authorlisasaunders.com/
http://congenitalcmv.blogspot.com/
saundersbooks@aol.com

Soap and Water Prevent Birth Defects

2009-11-25T03:48:00.000-08:00

Soon a magazine will be publishing the following story with sidebar. I was asked to get it down to 825 words, which I've done in the following:

Soap and Water Prevent Birth Defects
by
Lisa Saunders

Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV).

Although congenital CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they don't routinely caution their patients how to avoid the virus.

I'm a mother who didn't know about CMV prevention until it was too late for my daughter, Elizabeth, who was born severely disabled by congenital CMV in 1989. The moment I saw her, I felt a stab of fear--her head was so small, so deformed. The neonatologist said, "If she lives, she will never roll over, sit up, or feed herself." He was right.

How and why did I catch this virus that I had barely heard of? The CMV literature stated that the virus is spread through bodily fluids such as saliva and urine. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. (Nurses, however, do not seem to be in the risk category because they practice consistent hand-washing and aren’t kissing their patients around the mouth or sharing utensils with them).
While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

It took 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, the Book of Psalms, and a couple of prescription sedatives!

Sixteen years after Elizabeth’s birth, I awoke on her birthday feeling so proud of her. She had fought hard to stay with us, surviving several bouts of pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.

Two months after her 16th birthday, Elizabeth died suddenly during a seizure. Holding her body in his arms and looking into her lifeless eyes, my husband, Jim, cried, "No one is ever going to look at me again the way Elizabeth did." Now my girl would be forever "sweet sixteen."

In an effort to educate those who have never heard of congenital CMV, I wrote a light-hearted memoir about Elizabeth’s life with her lazy, old devoted canine, called, "Anything But a Dog! The perfect pet for a girl with congenital CMV." It includes interviews with the country's leading CMV experts and raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry.

To see photos of Elizabeth growing up or to meet other families affected by congenital CMV, please visit my Web site at http://www.authorlisasaunders.com/

###

Lisa Saunders is a full-time writer for the State University of New York at Rockland Community College and is a member of its Speakers Bureau. She is a STOP CMV and Congenital CVM Foundation representative and author of "Anything But a Dog! The perfect pet for a girl with congenital CMV"; "Ride a Horse, Not an Elevator" and "Ever True: A Union Private and His Wife." Lisa and her husband, Jim, reside in Suffern, New York, with their beagle/basset hound. Visit Lisa at http://www.authorlisasaunders.com/

SIDEBAR:
According to the Centers for Disease Control and Prevention (CDC):
· Every hour, congenital CMV causes one child to become disabled
· Each year, about 30,000 children are born with congenital CMV infection
· About 1 in 750 children is born with or develops permanent disabilities due to CMV
· About 8,000 children each year suffer permanent disabilities caused by CMV
Reduce Chances of Contracting CMV:
· Refrain from kissing children around the mouth
· Refrain from sharing food and utensils with others, especially children.
· Wash your hands diligently with soap and water after wiping runny noses, changing diapers, etc. If soap and water are not available, use alcohol-based hand gel.

Women Aren't Warned About #1 Birth Defects Virus

2009-10-07T03:17:00.001-07:00

Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV). And, many are never warned that kissing their toddlers around the mouth can lead to permanent disabilities for their developing fetus. (My daughter Elizabeth, pictured here, was born disabled by CMV.)

Although congenital CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children are at a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.

According to the Centers for Disease Control and Prevention (CDC):

Every hour, congenital CMV causes one child to become disabled

Each year, about 30,000 children are born with congenital CMV infection

About 1 in 750 children is born with or develops permanent disabilities due to CMV

In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.

I’m a mother who didn’t know about CMV prevention until it was too late for my daughter, Elizabeth, who was born with congenital CMV in 1989. The moment Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right.

By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Jim cried, “No one is ever going to look at me again the way Elizabeth did.” No other parent should have to feel that way—especially when there are precautions one can take to avoid this kind of suffering.

After speaking at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, G.A., to a community scientists and families about Elizabeth’s life with CMV, mothers approached me holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

One OB/GYN was quoted in FitPregnancy magazine (June/July '08) as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” Others simply don’t realize the prevalence of congenital CMV.

In their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.”

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry. About.com reviewed Anything But a Dog! saying, "Sheds light on a disorder that is preventable and not talked about enough…If you're an animal lover, you'll love the critter tales as much as the special-needs storyline…really lifted my spirits."

Please tell everyone about CMV and don’t forget to wash your hands!

Lisa Saunders, Parent Representative, Congenital CMV Foundation, and STOP CMV area rep.

CMV Parents: Send Letter to the Media

2009-09-22T04:08:00.000-07:00

Dear CMV Parents: If you like any of the following letters, just tweak it to focus on your child and your hometown and send it to any radio/TV stations/newspapers you are willing to be interviewed for (consider attaching a photo because that makes it more human and the print media need photos). Also, below my signature I included several links to CMV sources such as STOP CMV and the articles I quote.

Dear [name of producer/editor]

[Mention how you found out about them.]

Congenital CMV (cytomegalovirus) causes more birth defects than Down syndrome, yet very few women have actually heard how to prevent it. Would you be interested in interviewing congenital CMV experts and parents with CMV disabled children to educate the public how careful hand-washing and refraining from sharing utensils with toddlers can prevent this #1 viral cause of birth defects?

I live in Mystic,CT, am the parent representative of the Congenital CMV Foundation and a STOP CMV area representative. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV despite these figures from the CDC:
• Every hour, congenital CMV causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness , only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

My short TV news interview: http://video.aol.com/video-detail/coping-with-cmv/3443071507

To read about my CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog ! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv

I am a full-time writer for the State University of New York at Rockland Community College and a member of its Speakers Bureau.

Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).

Sincerely,
Lisa Saunders
[Include your full address and all phone numbers]
saundersbooks@aol.com
http://www.authorlisasaunders.com/

The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003 .My CMV blog: http://congenitalcmv.blogspot.com/

To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

CMV Information Sources:

CMV CDC site: http://www.cdc.gov/cmv/

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV p revention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.govThe other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biolog y Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

Toddler Saliva May Contain Birth Defects Virus

2009-05-12T03:23:00.000-07:00

Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV). And, women also need to know that they shouldn't kiss their toddlers around the mouth.

Although CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children are at a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.

According to the Centers for Disease Control and Prevention (CDC):
Every hour, congenital CMV causes one child to become disabled
Each year, about 30,000 children are born with congenital CMV infection
About 1 in 750 children is born with or develops permanent disabilities due to CMV (See http://www.cdc.gov/cmv/)

After speaking at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV, mothers approached me holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital. Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research and parent support if purchased through the Registry at www.unlimitedpublishing.com/cmv About.com reviewed Anything But a Dog! saying, "Sheds light on a disorder that is preventable and not talked about enough…If you're an animal lover, you'll love the critter tales as much as the special-needs storyline…really lifted my spirits." To read an excerpt, visit: http://anythingbutadog.blogspot.com/

Please tell everyone about CMV and don’t forget to wash your hands! If you would like to meet moms whose children were born with CMV infection or pick up handouts about CMV prevention, there will be a CMV Awareness table set up at Adventureland Amusement Park on Long Island this Saturday, May 16. If you want to know more about that, visit Lynn Pickus's blog about it at: http://cmvadventureland.blogspot.com/
Sincerely,
Lisa Saunders

Prevent #1 birth defects virus--LETTER TO POLITICIANS

2009-04-25T06:51:00.000-07:00

Letter to Politicians:

I’m asking you to help, through some sort of resolution, proclamation, or legislation, to promote an educational campaign aimed at teaching women of childbearing age how to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.

An educational campaign can mean something as simple as posting information about CMV prevention in the offices of OB/GYNs. You will find support for your efforts from the National Congenital CMV Disease Registry, the Congenital CMV Foundation and STOP CMV area parent reps who all work together to raise awareness and research funds.

I’m a mother who didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Holding Elizabeth’s body in his arms, Jim cried, “No one is ever going to look at me again the way Elizabeth did.” This kind of anguish must stop--especially since education might have avoided it.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV despite these CDC figures:
• Every hour, congenital CMV causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses [who it can harm]. Pregnant mothers who have young children in day care or who work in day care centers may help prevent getting infected with CMV by practicing good hygiene and by avoiding direct contact with saliva through behaviors such as kissing young children on the lips. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.”

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually. Surely it would save the government money overall if some time and resources were used to educate the public how to prevent contracting CMV. Other parents in the STOP CMV action network, and doctors who are the country’s leading CMV experts, advocate for legislation aimed at funds for the research and screening of congenital CMV in pregnant mothers and their newborn children.

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” Read an excerpt at http://anythingbutadog.blogspot.com/ It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv

To read about my CMV awareness work along with internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Let me know what I can do to help you raise a CMV prevention message.

Sincerely,

Lisa Saunders
I am a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and a STOP CMV and Congenital CVM Foundation representative as well as a member of the National CMV Disease Registry. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

My short TV news interview: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28

Other CMV Parents willing to be contacted available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.

My blog at: http://congenitalcmv.blogspot.com/

Sources of CMV and CMV Prevention Facts:

CMV CDC site: http://www.cdc.gov/cmv/

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/

“If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm

My Mom Gets Up at 5 a.m. to Stop #1 Birth Defects Virus

2009-04-11T04:41:00.000-07:00

Elizabeth and I on last family vacation

Several times a week, my mom, Lisa Saunders of Suffern, N.Y., wakes up around 5 a.m., and logs into her AOL account, hoping to make a difference in another mother's life that morning. She isn't online shopping, or surfing the Web for funny YouTube videos, she is desperately trying to spread awareness about the #1 viral cause of birth defects, congenital cytomegalovirus (CMV), the virus that eventually took my younger sister's life when she was only 16-years-old.

Because of her determination to prevent the spread of this virus, which causes more birth defects than Down syndrome, my mom takes time off of work, without pay, to talks at the Centers for Disease Control and Prevention (CDC), to nursing organizations, colleges such as Johns Hopkins, and other groups, to explain how to avoid contracting CMV.

My younger sister, Elizabeth, is the reason my mom sacrifices her time and energy to warning other mothers how to prevent the virus that handicapped her child. Besides writing to politicians, OB/GYNs, and connecting with other mothers of children with CMV through Facebook and other socialnetworks around the world, my mom has also written a humorous book, "Anything But a Dog! The perfect pet for a girl with congenital CMV," to warn others about the virus.

My mom writes:"The moment Elizabeth was born, I felt a stab of fear. My immediate thoughtwas 'Her head looks so small, so deformed.' The neonatologist declared, 'Your daughter has profound 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'sbirth defects were caused by congenital cytomegalovirus (CMV)--a virus that may have no symptoms for the mother, known as a 'silent virus,' or it maypresent itself with mild to severe flu-like symptoms to a mother during pregnancy."

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children areat a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.

If you are interested in hearing more about my mom's mission to spread awareness by reaching one mother at a time, if that's what it takes, you can contact her directly at saundersbooks@aol.com or read this story about her in a New York paper at:

http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Her blog, http://congenitalcmv.blogspot.com/, contains links to the CDC's Web site and other organizations for more facts about CMV.

Thank you for your consideration.

Jackie Saunders

Mom's bio: Lisa Saunders is a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and is a STOP CMV and Congenital CVM Foundation representative. A Cornell University graduate, she is the author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV" as well as "Ride a Horse, Not an Elevator" and "Ever True: A Union Private and His Wife." Lisa and her husband, Jim, reside in Suffern, New York, with their Beagle/Bassett Hound. See Lisa's short TV news interview about CMV at: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
See her books and articles at http://www.authorlisasaunders.com/

Source info about CMV:

CDC: http://www.cdc.gov/cmv/

Other CMV Parents willing to be contacted about CMV are available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007: www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

The 2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article on CMV in Fit Pregnancy Magazine, June/July 2008 issue, Article: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/ “If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm

Letter to TV Producers about CMV--H1N1 Not Only Virus to Fear

2009-04-11T04:33:00.000-07:00

The H1N1 virus (swine flu) isn't the only virus pregnant women need to guard against.

Your audience would probably be interested to know how to protect their unborn children from the #1 viral cause of birth defects--congenital CMV (cytomegalovirus), which causes more birth defects than Down syndrome. Few women have heard of it and half of OB/GYN's surveyed admitted they don't warn their patients about it.

I can help you pull together a panel of congenital CMV experts and parents with children disabled by CMV to discuss how careful hand-washing and refraining from sharing utensils and towels with toddlers can reduce the chances of pregnant women contracting the virus.

I am the parent representative of the Congenital CMV Foundation and a STOP CMV rep. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

Fewer than half (44%) of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 reported having counseled their patients how to prevent CMV infection despite these figures from the CDC:

• Every hour, congenital CMV causes one child to become disabled

• Each year, about 30,000 children are born with congenital CMV infection

• About 1 in 750 children is born with or develops permanent disabilities due to CMV

• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

My two minute TV news interview about CMV: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry. I also write about congenital CMV on my blog at: http://congenitalcmv.blogspot.com/

I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and a Cornell University graduate.

Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).

To read about my CMV awareness work along with advice from internationally known CMV experts (one, Dr. Demmler-Harrison, said she would come on your show and I'm sure the others would if asked), visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Sincerely,

Lisa Saunders

Suffern, NY 10901

845-574-4244 (W)

saundersbooks@aol.com

http://www.authorlisasaunders.com/

Other sources of congenital CMV information:

The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.

To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

CMV CDC site: http://www.cdc.gov/cmv/

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus

For more information about congenital CMV and how you can protect y our pregnancy, contact Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org, (832) 824-4387 or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Demmler-Harrison said, “I have spent my entire medical professional career studying the effects of congenital CMV on children and helping these children and their families who have been touched by congenital CMV. It is the most common congenital infection in this country, yet ironically, most people have never heard of CMV, until it affects them personally.” Anything But a Dog! The perfect pet for a girl with congenital CMV raises funds for CMV research if purchased through the National CMV Disease Registry at: www.unlimitedpublishing.com/cmv

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov He is the co-author of "Washing our hands of the congenital cytomegalovirus disease epidemic,” which can be seen at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Drs. Cannon and Davis state: “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.”

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. She said, "Ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease.”

Quotes and advice:

One OB/GYN was quoted in FitPregnancy magazine as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.

“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital.

Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”

Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/ “If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm

Preventing birth defects virus--CMV (cytomegalovirus)

2009-03-11T03:41:00.000-07:00

Through my public speaking, articles and book, Anything But a Dog! The perfect pet for a girl with congenital CMV, I am trying to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.

My daughter was born severely disabled by it in 1989 and since her death in 2006, I've been distressed to learn that pregnant women are still not being warned that many toddlers carry this virus in their saliva (and other bodily fluids). Women need to be taught not to kiss their children around the mouth, share food with them, and to wash hands diligently after wiping runny noses, etc.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV. One was quoted in FitPregnancy magazine as saying "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

For government information about CMV, visit the Centers for Disease Control and Prevention (CDC) at: www.cdc.gov/cmv/

The following is a short about my daughter Elizabeth Saunders and CMV prevention:

“Elizabeth: Forever Sweet 16 (because I caught CMV when pregnant)”

The moment Elizabeth was born, I felt a stab of fear. My immediate thought was "Her head looks so small — so deformed."

The neonatologist declared, "Your daughter has profound 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) — a virus that may have no symptoms for the mother, known as a "silent virus," or it may present itself with mild to severe flu-like symptoms to a mother during pregnancy.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome.How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after wiping runny noses, diaper changes, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.

Why didn’t my OB/GYN tell me about CMV and how to prevent contracting it? While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

It took about a year, but I eventually stopped praying that I'd be struck dead by lightening 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, the Book of Psalms, and a couple of Valium! We were eventually able to move ahead as a happy, "normal" family.

Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was still a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.

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. We called 911."We met her ambulance at the hospital. The medical staff did all they could, but she was gone. After they unhooked her from everything, my husband Jim and I took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth.

It has been three years since we lost Elizabeth (1989-2006). At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. For the remainder of my days Elizabeth will be forever "Sweet Sixteen."Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. To learn more about CMV prevention and emerging treatments, see pictures of Elizabeth with her devoted old dog, or to read an excerpt of my memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV", visit my Web site at http://www.authorlisasaunders.com/

Please help me stop the spread of CMV! If you would like me to speak to your group about CMV prevention, please email me at: saundersbooks@aol.com

Lisa Saunders, Suffern, NY
The Times Herald Record wrote about my CDC speech, work in CMV prevention, and included quotes from internationally known CMV experts in this article: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To watch my short TV news interview about CMV, please click into: http://www.wusa9.com/video/default.aspx?aid=70445&storyid=80502

To hear me for 52 minutes, listen to my radio interview at: http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3

Book Prevents Birth Defects

2009-03-11T03:35:00.000-07:00

Preventing birth defects by memoir

You may have seen the big news item published by Reuters (Dec. '08) about hearing loss and congenital CMV (cytomegalovirus)--the #1 viral cause of birth defects, which causes more disabilities than Down syndrome. Although largely preventable, OB/GYNs do not routinely warn their pregnant patients how to avoid contracting CMV.

I am the parent representative of the Congenital CMV Foundation and wrote my light-hearted memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), recently published by Unlimited Publishing LLC, in an effort to teach the public how to spare their unborn children from congenital CMV and to raise funds for CMV research. Through the use of humor, honesty, a series of disastrous pets and a big, homeless dog's devotion to my severely disabled daughter, my book is beginning to attract an audience that has never heard of CMV. In the closing chapter, I include highly useful resources, contacts and support for anyone whose life is touched by CMV. For an excerpt, see: http://anythingbutadog.blogspot.com/

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth who was born with severe cerebral palsy and mental retardation in 1989 as a result of congenital CMV. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my doctor warn me about CMV?"

Publisher: www.unlimitedpublishing.com/saunders

Author: If you would rather pay by check or PayPal, write to me at saundersbooks@aol.com

ABOUT ME:
I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and the Congential CMV Foundation parent representative and a STOP CMV area rep. My husband Jim and I live in the lower Hudson Valley with our beagle/Basset hound.

To see a write-up about my speech at the CDC, my efforts in CMV prevention and quotes from the doctors I work with, see: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To watch my very short news interview (1.5 min.) about CMV, click into: http://video.aol.com/video-detail/coping-with-cmv/3443071507

To listen to a long radio interview (52 min): http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3

Please help me prevent birth defects!

Sincerely,

Lisa Saunders
Suffern, NY
http://www.authorlisasaunders.com/

Hadar and Deanie Have Fun

2009-02-11T18:04:00.001-08:00

Times Herald Record Raises CMV Awareness

2009-01-24T04:35:00.000-08:00

FOR IMMEDIATE RELEASE
January 26, 2009
Lisa Saunders
Suffern, NY

saundersbooks@aol.com

Doctors Don’t Teach Prevention of #1 Birth Defects Virus MORE COMMON THAN DOWN SYNDROME

Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn

Suffern, N.Y. --On Jan. 21, the Times Herald Record published interviews with internationally known CMV experts about the #1 viral cause of birth defects--congenital cytomegalovirus (CMV), which is more common than Down syndrome. Most women have never heard how to protect themselves from contracting it during pregnancy.

The article, “What every pregnant woman needs to know,” by Deborah J. Botti, which includes an interview with Michael J. Cannon, Ph.D., a research epidemiologist at the Disease Control and Prevention (CDC ), addresses the controversy between CMV researchers regarding the benefits of routinely screening pregnant women for the disease. There is, however, little controversy about CMV’s devastating toll and the need for a prevention message.

Excerpt: “According to the CDC, CMV causes more permanent disabilities than Down syndrome, fetal alcohol syndrome, spina bifida or neural tube defects; yet, few people have heard of it. CMV is responsible for an estimated 400 deaths and about 8,000 children born with permanent disabilities each year.
“And CMV could potentially be responsible for far more disabilities because congenital CMV can only be conclusively diagnosed within the first three weeks of birth, and sometimes symptoms aren't seen for months or even years.
"’Nobody's even measured this yet in terms of mild learning disabilities," says Cannon of the virus that can cause hearing loss, vision loss, neurodevelopmental disabilities, small head size, growth delays and problems with the spleen, liver and lungs.” See full article, which includes photos of a little girl disabled by congenital CMV along with her mother, Lisa Saunders, Stop CMV and Congenital CMV Foundation parent representative, at: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To hear the CDC’s podcast about CMV prevention that is available for use by the media, listen to: Staying Healthy When a Baby's on the Way (0:59 minutes)

In December, Reuters raised awareness of the disease in the article, "Mom's infection raises risk of infant hearing loss," seen at http://www.reuters.com/article/healthNews/idUSTRE4BM4RV20081223

Contacts: For more information about the article, contact reporter, Deborah J. Botti, at anybotti@hvc.rr.com. For more information about congenital CMV, visit http://www.cdc.gov/cmv/ or contact Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov; Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program, at gjdemmle@texaschildrenshospital.org or visit www.bcm.edu/pedi/infect/cmv or call (832) 824-4387; or contact Congenital CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. To contact a parent willing to speak about their child’s experience with congenital CMV, e-mail Lisa Saunders, author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," at saundersbooks@aol.com or visit http://www.stopcmv.com/ to find a STOP CMV representative near you.

“Anything But a Dog! The perfect pet for a girl with congenital CMV,” raises funds for CMV research and parent support if purchased through the Registry at www.unlimitedpublishing.com/cmv

CDC Releases CMV E-Cards

2009-01-08T03:12:00.001-08:00

This link has CMV prevention e-cards to send to your friends plus podcasts to listen to:
http://www.cdc.gov/Features/Cytomegalovirus/

Reuters Article: Congenital CMV

2009-01-02T04:26:00.000-08:00

Reuters recently published an article about the #1 viral cause of birth defects, congenital CMV (cytomegalovirus). See "Mom's infection raises risk of infant hearing loss" at http://www.reuters.com/article/healthNews/idUSTRE4BM4RV20081223

I am the mother of a daughter disabled by congenital CMV. I was never warned how to prevent contracting this virus even though it is a more common cause of disabilities than Down syndrome. I am the parent rep for the Congenital CMV Foundation and spoke at the international 2008 Congenital CMV Conference at the Centers for Disease Control and Prevention (CDC) in Atlanta. I would like to see OB/GYNs warn their patients about CMV and teach them the CDC’s recommendations for avoiding it (careful handwashing, being cautious around the saliva of young children, etc). If people are interested in learning more about my daughter's life with congenital CMV; a big, homeless dog's devotion to her, and the latest news on CMV prevention and treatment, they can view the National Congenital CMV Disease Registry's special edition of my humorous memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” on http://www.unlimitedpublishing.com/cmv/ If copies are purchased through that link, a percent of the profits are donated to congenital CMV research and parent support.

Lisa Saunders
Suffern, New York
www.authorlisasaunders.com

CDC, Congenital CMV (cytomegalovirus) and "Anything But a Dog!"

2008-11-21T02:32:00.000-08:00

I have just returned from speaking at an international conference held at the Centers for Disease Control and Prevention (CDC) in Atlanta. I am a mother who was not warned how to protect my unborn child from the #1 birth defects virus, congenital CMV (cytomegalovirus). OB/GYNs still do not warn women about it and I'm trying to change that in the United States. Below is a press release I have put together with additional contact information if you feel you can make this into a story (or at least a mention)!

IMMEDIATE RELEASE:
Lisa SaundersSuffern, NY
saundersbooks@aol.com

CDC Raises Awareness of #1 Birth Defects Virus--MORE COMMON THAN DOWN SYNDROME

Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn

Suffern, NY. The largest international gathering ever of clinicians and researchers focused on the prevention and control of congenital cytomegalovirus (CMV)—the #1 viral cause of mental and physical handicaps—at the Centers for Disease Control and Prevention.

The 2008 Congenital CMV Conference was held in Atlanta, GA, on November 5-7. More than 250 attendees came from 20 countries and included virologists, epidemiologists, pediatricians, immunologists, perinatalogists, maternal-fetal medicine specialists, health education specialists, advocacy experts, OB/GYNs, parents and grandparents. The countries represented included Israel, Italy, France, Portugal, U.K., Belgium, The Netherlands, Sweden, Denmark, New Zealand, Australia, Ukraine, Canada, China, India, Japan and others.

Lisa Saunders of Suffern, NY, author and Congenital CMV Foundation Parent Representative, spoke at the Conference. She said that the moment her daughter Elizabeth was born, she was devastated because her head was so small and deformed. She was never warned that she had put her pregnancy at risk by working in daycare.

Lisa states, "Seeing all of those scientists and health practitioners who have spent much of there career working on CMV, and even those who are just beginning, erased all those years of feeling alone with what this little publicized disease did to my daughter and to my family. I was touched when one scientist told me that working with molecules can be lonely work, but hearing me speak and reading my story gave her inspiration." (Saunders' humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," raises funds for CMV research and parent support if purchased through the Congenital CMV Disease Registry at www.unlimitedpublishing.com/cmv )

According to the CDC (www.cdc.gov/cmv)
#Every hour, congenital CMV causes one child to become disabled
#Approximately 8,000 children each year suffer permanent disabilities caused by CMV.

The CDC recommends that pregnant women practice frequent hand-washing, especially after diaper changes, and avoid kissing young children on the mouth and sharing food, towels or utensils with them. (Congenital CMV precautions are also listed in their Pregnancy Information site at: www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm).

CONTACTS/MORE INFO:For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387. The book, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” may be purchased through them at www.unlimitedpublishing.com/cmv Copies are available to members of the working press by contacting 800-218-8877 or news@unlimitedpublishing.com

The 2008 Congenital CMV Conference was sponsored by the CDC and the Congenital CMV Foundation. For more information, contact Lenore Pereira, Ph.D. at lenore.pereira@ucsf.edu. The Foundation Web site, www.congenitalcmv.org/ includes Members of the Scientific Advisory Committee with their contact information. You may contact the Conference co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov

“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,” stated Drs. Cannon (of the CDC) and Davis in their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” available on: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Hear the brief CDC/CMV podcast at:: http://www2a.cdc.gov/podcasts/player.asp?f=7926

Mothers and Scientists Combat Birth Defects Virus

2008-05-24T02:49:00.000-07:00

CDC Raises Awareness of #1 Viral Cause of Disablities--More Common Than Down Syndrome

Suffern, NY. In an effort to prevent the #1 viral cause of mental and physical handicaps, an international community of scientists, academics, practitioners, and families will gather to discuss congenital CMV research findings and how they can be translated into public health action.

The 2008 Congenital CMV Conference will be held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, on November 5-7. http://www.cmvconference2008.com/

According to the CDC:

#Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects

#Every hour, congenital CMV causes one child to become disabled

#Approximately 1 in 150 children is born with congenital CMV infection #Approximately 8,000 children each year suffer permanent disabilities caused by CMV.

Lisa Saunders of Suffern, NY, author and Congenital CMV Foundation Parent Representative, will speak at the Conference. She said, “The moment my daughter Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. I was never warned that I put my pregnancy at risk by working in daycare.” Elizabeth is pictured above. For information about her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV, visit: http://www.authorlisasaunders.com/ See her mission at: http://www.hvbiz.biz/health/health09220801.php

“We expect the 2008 Congenital CMV Conference will raise awareness of birth defects in the broad medical community and the general public. And ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease,” said, Lenore Pereira, Ph.D., Conference Co-Organizer and Founder, Congenital CMV Foundation.

CMV is found in body fluids, including urine, saliva, breast milk, blood, tears, semen, and vaginal fluids. The CDC recommends that pregnant women practice frequent hand-washing, especially after diaper changes, and avoid kissing young children on the mouth or cheek and sharing food, towels or utensils with them. See brochure: www.cdc.gov/cmv/resources/CMV_Brochure_Eng.pdf Hear podcast: www2a.cdc.gov/podcasts/player.asp?f=7926

“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,” state Drs. Cannon and Davis. See article http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

CONTACTS/MORE INFO:

The 2008 Congenital CMV Conference is sponsored by the CDC and the Congenital CMV Foundation. For more information, contact Lenore Pereira, Ph.D. at lenore.pereira@ucsf.edu or visit http://www.cmvconference2008.com/. The Foundation Web site, www.congenitalcmv.org/ includes Members of the Scientific Advisory Committee with their contact information. You may contact the Conference co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. To donate/contact the Registry, call (832) 824-4387.

There have been recent breakthroughs in helping unborn children if their mothers become infected with CMV. Treatment of CMV infected women with intravenous CMV hyperimmune globulin is showing promising results. See Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection

Others affected by CMV willing to be contacted by the media:

Angela Davis of Cape Coral, Florida, is the mother of Chloe born in 2003. “I was so careful during my pregnancy, doing everything I could to protect her and WHAM out of nowhere—like lightning striking. It seemed so unfair that no one felt her life was significant enough to give the necessary precautions.” Angela stated that if she’d been warned, she wouldn’t have changed diapers or shared food and drinks with her children. Speaking of the pregnancy complications of toxoplasmosis, Angela continued: “It seems kind of silly that they tell you not to change the cat litter but forget to tell you not to change the baby.” Chloe has microcephaly, cerebral palsy, brain damage, deafness and autistic-like behaviors. Web: http://web.mac.com/luvmykidz/congenitalcmvchildren E-mail: angie-davis@COMCAST.NET

Janelle Greenlee of Sunnyvale, California, is the mother of twin sisters, Riley and Rachel, born in 2003. Janelle, one of the first mothers to start a CMV Awareness campaign in the United States, began her efforts while her daughters were infants, sometimes cuddled on her chest while she wrote online. "We hope that women, families and friends will become familiar with the CMV virus and will take vigilant steps to prevent infection. We believe that it is better for women and their families to learn about CMV well prior to pregnancy so that they will never have to learn of it when it is too late, like many of our families have." Riley has cerebral palsy and is profoundly deaf, while Rachel has cerebral palsy, microcephaly, seizure disorder, G-tube, visual impairment and is also profoundly deaf. Meet Riley and Rachel at http://www.rileyandrachel.com/. “Stop CMV” T-shirts are available through Janelle’s Web site at http://www.stopcmv.com/ email: stopcmv@yahoo.com

Lori LeClair of Ontario, Canada, is the mother of Camryn born in 2002. Until Camryn's birth, Lori never heard of CMV and had she known, she said, "I would have been insane about washing my hands, carrying around hand sanitizer 100 % of the time. I also would have asked to be tested for CMV antibodies prior to getting pregnant." Camryn is profoundly mentally retarded, legally blind, spastic quadriplegia, non-verbal, began having seizures at the age of two, has reflux, wears diapers, eats via feeding tube and she has lost hearing in left ear. gleclairc543@rogers.com

Tracy McGinnis of Omaha, Nebraska, is the mother of Brendan, born in 2004. "When my son was diagnosed with congenital CMV at three weeks of age, I had never heard of it before. After the first few months of this challenging and painful diagnosis, I became determined to do all I could to keep this from happening to other children. I have since established the Brendan B. McGinnis Congenital CMV Foundation, named in honor of my son. Its primary focus is to raise public awareness about CMV and to educate women to demand to be tested for CMV prior to pregnancy.” Brendan has severe cerebral palsy, microcephaly, global developmental delays, deafness in one ear, sleep issues, dental issues, a feeding tube, is nonambulatory, nonverbal and most recently developed seizures at age three and a half years old. See the non-profit Brendan B. McGinnis Congenital CMV Foundation, a 501 (c)(3), at http://www.cmvfoundation.org/. T-shirts to raise awareness are now available. E-mail: mcginnis@cmvfoundation.org

Lynn Pickus of Plainview, New York, is the mother of Noah born in 2004. Lynn is trying to establish a CMV awareness day. She learned that in order to create one, "a bill of sorts must be passed. I have contacted my congressman's office and they told me it needs to start in the senate. I have been in contact with my senator's office but I was told that it is very difficult to get an Awareness Day because there are so many diseases. I passed along CMV information to the person in charge of health issues, and she will approach the judiciary committee/office with it. If anyone is interested in contacting their elected officials visit www.usa.gov/Contact/Elected.shtml to find out who yours are. Maybe you’ll contact someone who will do something. The more phone calls, the better chance we have.” Noah has a moderate to severe hearing loss, right hemiparisis due to cerebral palsy, seizure disorder, feeding disorder, and global developmental delays. LKelli@aol.com,

Carmen Burton of England is the mother of Natalie born in 1993. "Natalie knows she is one of the lucky ones because she can walk and communicate and learn things, even though she finds it harder than her classmates, but she still hates CMV. She likes talking to people about it—she knows it can't be cured, but she wants people to understand how she feels, and she wants the doctors to find a cure so that more babies don't get it. I get so angry when I go to the Dr.'s surgery or hospitals and see posters for Rubella, Meningitis and Toxoplasmosis but nothing about CMV. As the Coordinator of the Congenital Cytomegalovirus Association UK, my aim is to raise enough money to get a CMV Awareness poster in every Dr's, midwife, and baby clinic in the UK." Natalie is profoundly deaf and has a Cochlear Implant. She has epilepsy, learning difficulties, mixed muscle tone, sleep and eating issues. She is currently in assessment for vestibular dysfunction and Asberger Syndrome. See the Congenital Cytomegalovirus Association UK at http://www.cmvsupport.org/ Email: carmen.burton@ntlworld.com

Tina Konczol, of Walker, Louisiana, is the mother of Chelsea born in1996. “Even though it's too late for our children, we would love to see progress made on preventing other children from being born with congenital CMV.” Tina is the “owner” of the parent-member CMV LISTSERV, http://listserv.syr.edu/archives/cmv.html. If you have a child with congenital CMV, join the group to ask questions, give advice, or to simply feel less alone in the daily joys and struggles of raising your child. Chelsea had severe spastic quadriplegia cerebral palsy, epilepsy, progressive hearing loss, and was legally blind, profoundly mentally retarded, non-verbal, non-ambulatory, etc. She died just before her fourth birthday. tinak2001@aol.com

Christi Wahnschaffe of Puyallup, Washington, is the mother of Cameron born in 1995. “I fully believe that I could have prevented CMV had I been made aware of the risks. It is so frustrating to me that the world is so hesitant to educate women about CMV—we could be saving babies from severe disabilities or even death.” Cameron is profoundly deaf, has developmental delays, Speech Language Impairment, Obsessive Compulsive Disorder and Attention Issues. wahnfam@msn.com

Jenny McPherson of Augusta, Georgia, is the mother of Abby born 2004. “I had never heard of CMV before I had Abby. I believe all pregnant women should be screened for CMV and be educated about the risks and prevention of CMV during their initial prenatal visit.” Abby has a VP shunt due to hydrocephalus, profound hearing loss, vision impairment, seizure disorder, feeding disorder, and profound cognitive and developmental delays. jennyandarchie@knology.net

Jenny Bailey of Houston, Texas, is the mother of Caroline born in 1990. "Caroline was the first baby in Houston to get the ganciclovir treatment, and other than profound hearing loss, she has been fine. The treatment stopped the progress of the disease in her central nervous system in its tracks. In fact, she began reading at age three, was mainstreamed at five, and graduated from high school this year after taking five AP classes senior year and working at Barnes & Noble." Caroline had the cochlear implant surgery at age 14. jmb101@comcast.net

Chantelle Rowe of Australia is the mother of son Kaiden, born July 4, 2007. "I wish I had known about CMV when I was pregnant. I was one of those women who stuck to all the rules, down to a T. I only ate what I was told to and I stayed away from EVERYTHING I was told to avoid. It just felt like the biggest slap in the face when it happened to me. I was very: 'WHY ME???'" Kaiden is doing very well, but has moderate/severe loss to left ear and profound to right. Chantelle raises awareness through her site: www.myspace.com/cmvawareness E-mail: channy_1985@yahoo.com.au

To see photos of other children born with CMV, view the CMV poster available on http://www.cmvinformation.com/

*Lisa Saunders is a writer for the State University of New York at Rockland. Her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), is the moving and sometimes humorous account of Elizabeth’s life with pets, and includes the latest news on CMV prevention and treatment plus comments from scientists and other parents affected by congenital CMV. Advance copies are available to members of the working press by contacting 800-218-8877 or news@unlimitedpublishing.com. Contact Lisa Saunders directly for an interview or an autographed copy at saundersbooks@aol.com. To see a photos of Elizabeth Saunders,visit http://www.authorlisasaunders.com/, to see list of mothers willing to be interviewed, visit Lisa's CMV blog at: http://congenitalcmv.blogspot.com/

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National Health Observances

2008-05-16T13:56:00.000-07:00

Lynn lkelli@AOL.COM received this e-mail about creating National Health Observances
The Office of Disease Prevention and Health Promotion (ODPHP) has forwarded your message to the National Health Information Center (NHIC). healthfinder.gov and NHIC are information and referral services sponsored by ODPHP.

The general criteria for including a health event in the National Health Observances (NHO) Calendar are:
-- national status, evidenced by official sponsorship by a national organization or recognition by the U.S. Congress, the White House, or the U.S. Department of Health and Human Services
-- materials for public health program planners, either on the Internet or in print, and contact information for obtaining them
-- educational information for the public
-- health prevention-related observance that does not promote commercial entities or professions.

Please note that NHIC does not sanction, approve, qualify, validate or name national health observances. The service we provide is in compiling and publishing awareness dates once the observances have achieved national status and the sponsoring organizations are able to submit proof, usually an official declaration or proclamation, when requesting the event be added to the NHO calendar. An example of an official proclamation designating a national health awareness can be viewed at: http://www.whitehouse.gov/news/releases/2008/04/20080401-6.html. You may wish to contact your state representative for consultation on how to establish and declare a national health observance.

Help Protect Babies from CMV

2008-04-12T05:08:00.000-07:00

How you can help protect unborn children from CMV:
1.)Print out the brochure found on the CDC Web site and ask your doctors to post it in their waiting rooms. See Brochure on CMV http://www.cdc.gov/cmv/resources/CMV_Brochure_Eng.pdf

2.) Donate to an organization that supports CMV research, disseminates information and provides a parent support group, contact the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv.

2.5) Donate to the Congenital CMV Foundation. They support research and education: http://www.congenitalcmv.org/donate.htm

3) Contact some of the following groups with CMV information. Perhaps they'll post in their newsletter/magazine and Web sites. There are also many online newsletters for pregnant Tell Ask them to put CMV on the list that pregnant women should avoid. Ask them to tell doctors to warn pregnant women about CMV and how they can avoid it. Remind them it is the leading viral cause of mental retardation and hearing loss.

American College of Obstetricians and Gynecologists, http://www.acog.org/409 12th St., S.W., PO Box 96920Washington, D.C. 20090-6920(202) 638-5577

March of Dimes, (914) 997-4488, http://www.marchofdimes.com/
1275 Mamaroneck AvenueWhite Plains, NY 10605

MOPS, Mothers of Preschoolers. http://www.mops.org/

4)Write letters to the editor of your local papers and magazines
5)Get on shows like "Montel Williams"
6)Write letters to representatives in Congress.
7)Take a leadership role in organizing parent groups. The Baylor parent group is the place to start.

A mother who made a difference offers ideas:
Marti Perhach marti.perhach@gbs-intl.org, whose daugther Rose was stillborn as a result of Group B Strep infection, has given me many ideas such as: "Starting your own health observance month just for CMV (I’m not sure if you can do that as an individual) on the National Health Observance Calendar is the best free promotion. http://www.healthfinder.gov/library/nho/ . This page on the Jesse Cause website http://www.thejessecause.org/pages/awareness.html has some ideas. As to the Health Observance Calendar, you would need to have a website for them to refer to or materials to mail or that they can download. October is Pregnancy and Infant Loss Awareness Month in case that is a promotional tool you can use. It is not on the Health Obs. Calendar but is recognized by Compassionate Friends and the SIDS alliance. You can also start pregnancy board threads or contact women’s health websites. I sent the CMV info to a South African website where the moms are promoting Prenatal Infection month with us.
The CDC is putting together a website section and materials on prenatal infections that should be ready in the next few months. The American College of Nurses and Midwives were very receptive. Can you partner with the company that manufactures the CMV test to help get out the information? Ideally I would like to have a brochure in both the prenatal and postnatal gift bags that moms get although that’s a very expensive project—hopefully someday soon! I don’t know of any publishers unless you got a sponsor like Lysol (they sponsored a poster on the CDC website) or a medical company that does patient information (can’t think of any right now but there’s always literature at the doctors’/pharmacy.)Doctors need CME credits so maybe you could get a company to sponsor a lecture on CMV info and the doctor gets their continuing education credit.
Marti's group: ~Group B Strep International~ Group B Strep International was formed in April 2006 by John MacDonald and Marti Perhach who each lost a daughter to Group B strep (GBS). ...www.groupbstrepinternational.org/about.html

CMV moms who said they will help raise awareness:
Lynn Pickus, Lkelli@AOl.comMom to Noah, age 2, born with congenital CMV and big sister Ashley, age 4. My hope is that through our efforts we can prevent other families from the effects that CMV has on an unborn child.
Amanda McClaren, mandyshea1974@yahoo.comSon Marcus passed away from congenital CMV complications at the age of three.