James's Project

Dear AAP, Is there a Better Way?

2011-07-23T05:50:00.001-07:00

Dear Members of the American Academy of Pediatricians:
Thank you for taking care of our babies and children.

But seriously, there must be a better way.

Your professional members look to you for policy statements and guidelines on professional practice.
What is the threshold of injured babies and children before you issue a policy, statement or recommendation on an issue that is an problem or improvement in your specialty?

Next month you will issue new guidelines about screening for child abuse by your own. The impetus took a criminal conviction of one of your own that has documented complaints against him for over twenty years.
Does the justice system have to be involved in all of your recommendations?

Currently, a federal clinical work group in coordination with HRSA has established an evidence based recommendation on the implementation of the available, inexpensive, and noninvasive pulse ox screening to detect the most common birth defects in newborns. While the New Jersey chapter of your organization issued a letter stating their support of this screening, you have not done so.
Your members are waiting for your movement before they screen.
Newborns with critical congenital heart disease cannot wait.

A decade ago a mom had to engage the Joint Commission and the World Health Organization and federal legislation to get universal screening for PKU.

Whether protecting our children from professionals who abuse or newborns from the adverse effects of delayed diagnosis of CCHD or PKU, parents and professionals look to you for your guidance. The children look to the parents and pediatricians?

There must be a better way to compile all the danger zones, share the information more widely, and disseminate the information more quickly to save more babies.

Isn't there?

Childhood is too short to wait too long. You must feel the same as Taoiseach Enda Kenney of Ireland, "I want to do all I can to protect the sacred space of childhood and to restore its innocence."

A Pediatrician gets Postpartum PTSD

2011-07-21T14:05:00.000-07:00

A peer of mine in patient advocacy happens to be a pediatrician.
Even doctors are at risk when they become patients.
Their babies are as at risk as anyone.

What happens when it happens to a doc?
You get a diagnosis - Postpartum PTSD

What did you get?

Thanks to Dr Tricia Pil for her courage in transparency Thanks for her integrity to share her story. Thanks also for her willingness to help others.

Something is Wrong

2011-07-17T20:05:00.000-07:00

There is something terribly wrong with my Facebook wall.

Among the many hats I wear both online and in life, I am a heart and angel mom, patient safety advocate, community based health educator, and communication skills facilitator for healthcare and education professionals. The intersection of these titles bring many people to my Facebook all that have, know, care for or miss a child who is/was sick.

Since most of my advocacy focuses on newborn and maternal health, there is a lot of news about babies on my Wall.

The past two weeks, my wall and private messages are full of sad news.
Babies that are struggling to make it in a hospital.
Moms who are screaming with handcuffed motivation to help their hospitalized child.
Babies that have died.
Friends of sick babies praying and passing balloons of hope and remembrance.

It's July.
The worst time of the year to be in a hospital.
And it's babies.
Babies are more susceptible to preventable medical errors than any other pediatric population according to aggregated data collected by The Empowered Patient Coalition.
When parents begin to demand patient safety best practices in newborn and infant care, maybe our infant mortality rate will improve.

Is it acceptable that a parent is not given the right to ask for a different nurse for her child in an ICU/NICU/CICU? Especially after a series of shifts with this nurse and something goes wrong every shift.

Why is it acceptable fr 7 months to pass before an autopsy reports or a few requested medical records are delivered to grieving parents?

How is it okay that we can but don't screen for the most common birth defect? How is the cost that is equivalent to one more diaper change in a hospital too expensive?

Aren't babies worth it?

Parents have to demand it.
Even if your child is born with a birth defect he has every right to safe, quality care.
Even when a child develops an illness in infancy, he deserves to have the best chances of healing by having clinicians that measure correct medicine dosages, check medication labels, wash their hands with soap and water, and include the parent as an equal member of the treatment team.

The more parents know; the more they can help clinicians.
The more clinicians listen to their patients & patients' parents; more babies will survive.

Today's lessons:
Avoid the hospital in July.
Learn about patient & family activated rapid response teams.
Advocate for residents and nurses to have limited work hours.
If you are a clinician, spend a few minutes really listening to a pediatric patients parents.
If you are a parent, always ask when you have a question. You always deserve an answer - even if its, "I don't know the answer but I will help you find it."

Then maybe my Facebook Wall in July won't look so "wrong".

How Much is Baby's Life Worth?

2011-06-29T12:29:00.000-07:00

Really.
Think about that question.
And try to come up with an answer.
"Priceless" doesn't count.

While you are thinking about it, planning is underway to celebrate the 234rd birthday of our country. Do you know who did NOT sign The Declaration of Independence on July 4, 1776 in Philadelphia, PA?
Me neither.

Benjamin Franklin counseled John Morton in the days leading to the Continental Congress.
Morton was hesitant to sign since the colony he represented, the largest colony, Pennsylvania, appeared "split" over whether or not to sign the Declaration of Independence. Morton knew he would not be re-elected if he signed.
Franklin told Morton, "But, you will be remembered as a signor."
Morton signed.
He was not re-elected.

Today Pennsylvania senators are being asked to sign - er, co-sponsor technically, a bill requiring screening of newborns for the most common birth defect - congenital heart defects. It affects approximately 1 in 100 babies.

Two states already signed their own legislation to protect the hearts of Americans newborns. In addition to Pennsylvania, eleven others are considering it. Kathleen Sebelius at The US Dept of Health and Human Services (and countless others in courtrooms and hospitals) are coming up with a number. Can we afford to NOT sign a law to screen for the most common birth defect when we also have the worst infant mortality rate among industrialized nations?Gilbert Welch,MD cautions "No question about it raising health care costs, it definitely will," says Gilbert Welch.

The cost of a diaper change in a hospital is around $10. The cost of labor and delivery is between $4500-5000 for a normal single delivery (depending on location,etc). The cost of a pulse oximeter sensor for newborns is around $4.00.

But how much is a baby's life worth?
Can you come up with a number?

In saving lives, it is possible to actually save money too.
How do you want to be remembered as we improve healthcare for newborns with the most common birth defect - as a signor?
Or, not remembered at all.

Urinary Catheters - Parents, Read Up

2011-06-28T04:53:00.000-07:00

The following information is shared from "SafetyShare newsletter, Premier healthcare alliance"

Why can’t we get those urinary catheters out? Will government action provide impetus?
--------------------------------------------------------------------------------
After more than three decades of evidence, we are still struggling to implement a reliable process to ensure removal of unnecessary urinary catheters to prevent catheter-associated urinary tract infections (CAUTIs). So now the government is ramping up reimbursement tied to infections. Will it make a difference?

Harm and cost burden. CAUTIs represent patient harm, reservoirs of antimicrobial-resistant microorganisms and unnecessary costs. Forty percent of all hospital-acquired infections are CAUTIs with more than a half million patients developing infections and 13,000 deaths each year, adding an estimated $320 million to the cost of healthcare. (VenDenBos, Umcheid, Klevens)

Kicking the catheter habit. Although "no catheter-no infection" seems intuitive, "disrupting the life cycle of the urinary catheter" is complex and requires a combination of behavior changes, simplified communication and data collection to measure and sustain success. (Meddings)

What do we stand to lose? The stakes are high. The Centers for Medicare & Medicaid Services (CMS) reduced payment for CAUTIs under the hospital-acquired condition (HAC) program established by Congress in 2005. The HHS National Action Plan has a goal to reduce CAUTIs by 25 percent by 2013. The Joint Commission has just added CAUTIs as a National Patient Safety Goal for 2012. CMS’ upcoming value-based purchasing program will require public reporting of CAUTI rates and postoperative catheter use, and in FY 2015 will begin deeper pay cuts for all hospitals in the highest quartile of complication rates.

What works. We have nearly mastered sterile catheter insertion and maintenance, but the focus must include avoiding placement altogether or quick removal, according to the most recent CDC Guidelines.

Provide alternatives, reminders, stop orders, dedicated staff
Once the units with high volume and/or inappropriate usage of indwelling catheters are identified, a plan of action can begin. (Meddings)

Provide alternatives. Have readily available alternatives to indwelling catheters, such as condom and straight catheters, and provide the extra time required to care for patients with incontinence.
Reminders. Incorporating reminders of specific indications for catheter use as part of standard orders for indwelling catheters has been found to be effective in supporting the decision to place or avoid placement of indwelling catheters. Actually removing catheters is a bit more difficult. Steps require: (1) recognition that the catheter is present; (2) recognition that it is unnecessary; (3) an order for removal; and (4) the nurse removing the catheter in response to the physician's order.
Stop orders. A powerful intervention is a default stop date three days after placement to accompany every catheter order. Details are key when designing and implementing catheter reminders and stop orders, such as the expiration date of the order or pre-approval of a protocol for nurses to remove a catheter without a specific order.
Dedicated staff. Another successful intervention is the use of a dedicated "catheter nurse" who focuses on collecting catheter prevalence data, reminding providers to remove catheters, and placing catheter orders on charts, thus minimizing the challenges of the steps needed to remove catheters as noted earlier. (Knoll)
Regardless of the type of intervention, key to ensuring use of only appropriate catheters is identifying "champions" who are motivated, enthusiastic and able to foster buy-in and commitment from peers to promote a positive culture change. Nevertheless, if steps are not taken to intensify reductions in preventable CAUTIs for the sake of the patient, increasing pressure from regulators and accreditors appears to be forcing change by simply not paying for them.

For more information on HAIs see the Premier Safety Institute® HAI website

Citations

Van Den Bos J, et al. The $17.1 billion problem: The annual cost of measurable medical errors.
Umscheid CA, et al. Estimating the proportion of healthcare-associated infections that are reasonably preventable and the related mortality and costs.
Klevens, R.M. Estimating health care-associated infections and deaths in U.S. hospitals.
HHS - HHS National Action Plan
Meddings J and Saint S. Disrupting the life cycle of the urinary catheter.
Knoll BM, et al. Reduction of inappropriate urinary catheter use at a veterans affairs hospital through a multifaceted quality improvement project.

Oh The Things You Don't Know - MEET TEAM CHF

2011-06-23T21:20:00.001-07:00

Did you know two guys are riding their bikes across the country?
Did you know one of them was born with a heart defect and has had open heart surgery as a child?
Did you know the wife of the other was basically born with half a heart and is now a beautiful 20-something?
Do you know what the most common birth defect is?

Yup - most people don't know all that. But you should.
Stay tuned as they get closer to PA where we will be present to welocme them to Philadelphia! (Devon to be exact.)

Physician Non-compliance

2011-06-22T04:13:00.000-07:00

Some of the most challenging moments with children is when they realize they have some power. The kid has that moment of, "Hey, what will mom/my teacher really do if I don't do what she says?" In that second the empowerment bulb goes off and a new level of independence has begun. The trick is to still convince the learner to succumb without taking away their newfound autonomy.

As a teacher and parent, sharing more knowledge and awareness with the child is how you can actually get more compliance. More time will be invested in explaining, but in the long run time and aggravation is also saved.

I received a note from a grieving mom who is in daily physical pain and has had a terrible time getting access to quality care. The communication between the physicians she has seen has been non-existent. To the point that yesterday one doctor told her NEVER to go to the ER for her pain, while just a few moments later another doctor instructed her to GO to the ER.

The healthcare system has been well aware of these types of breakdowns for some time now. To the point that new CMS director, Do Berwick,MD created a new initiative called Partnership for Patients. The Partnership has a new webinar series available to help increase the level of awareness of the issues and nest practices to resolve them. The first webinar was this week - but, many registered participants, including your's truly were unable to access the event. I know a number of people who had carefully carved out the time to participate but came up with nothing. Fortunately a recoding is now available here.

Again time and access and compliance.

Another mother (also a registered RN) called yesterday looking for an advocate as she lays in one of the most well-respected academic based healthcare institutions in the world. She is being treated for an infected port-o-cath. It took them 3 full hospitalized days to decide to remove the infected cath, all the while the infection spread.

I no longer see the issue as patient non-compliance. It seems a lot more like clinician non-compliance. The tools and information are available to the member of the healthcare system. You need to talk to each other. Please utilize all the new tools available to you to provide the safest care to your patients - now my clients.

There is a great deal of pain and grieving in the clinical realm. These healthcare practitioners went into their chosen field as mission-driven, hope-filled youth looking to make a positive impact in other's lives. After actually working in the field many find it a harsh and demanding world that does very little to nurture their human spirit. Sadly, many of their spirits are crushed. Just like any preschooler with new found autonomy, no one should be crushing our physicians and nurses. No system should be allowed to do that either.

Clinicians must care for themselves to care for their patients. This is your patient's presciption for you. Please comply. Patient safety is a real issue and clinicians could end up on the wrong side of the statistics someday too.

Clinicians your patients need you to know how to communicate. It is no longer the 20th century. Patients expectations, access to information and healthcare autonomy is in line with the future not the past. Dr. Spock changed the way parents interacted with pediatricians more than half a century ago. Things have changed.

Saturday Morning Coach

2011-06-16T20:37:00.000-07:00

He stays up late writing, wiping and re-writing plays on a wipeboard.

He wakes up three hours early each Saturday morning.

He finds music the players relate to to get them charged for the games.

He tightens laces and straightens jerseys.

He teaches them how to fall.

He shows them how to get back up - quickly.

He lets them try to hit him hard enough to make him fall, while teaching them how to take a hit without falling.

He shows them how to wrap a stick so it's easier to pick up when they drop it.

He makes sure they each wear the neck guard.

He buys them supplies when needed.

He takes and returns calls about the player's ice time.

He stands tall and listens to every criticism the players' parents throw at him.

He understands.

He understands they just want the best for their kid.

He feels regret and sorrow for not winning.

He gives each player a positive comment on their play.

He is not called Dad by any teammate.

At the end of each game, he stops by to see you, talk to you, share stories, regrets and his disappointments on his performance.

In the moment it takes to bend down to give you a game puck after the last game of the season, he remembers holding you, feeding you, reading to you, and hoping you would make it.

Then he places the puck by your name. And calls you his Superman.

He is a good coach. He is a great dad.

Time to Teach to the CHD Test

2011-06-13T19:32:00.000-07:00

In a matter of weeks (if not days) The James Matthew Mannix Bill will be introduced by state Senator Daylin Leach (D) to the Pennsylvania legislature. If passed, this bill will update laws on newborn screening first introduced in 1967. If passed, this Pennsylvania bill will require all healthcare providers who provide birthing services to administer a pulse oximetry test to screen for congenital heart defects after 24 hours of life. This technology was first invented by Miliken in the 1940s.
Seven decades later and we only now are asking to make the technology apart of the birthing experience.

Since I began suggesting that this is a worthwhile effort to improve the safety and efficacy of pediatric cardiology care, I am very often asked two questions. Though the words and delivery are different depending on the person's background and set of life experiences, the questions are basically the same two.
Why now?
Will this really make a difference?

The former is the easiest to address. This is happening now, because for the first time in pediatric cardiology the profession has evidence of long term survival of patients with previously untreatable forms of congenital heart defects. In the early 80's James's surgeon, William Norwood, began pushing the envelope to save babies born with basically half a heart - "hypoplastic Left heart syndrome". HLHS. Now some of these babies are in their late twenties. Now parents whose unborn or newly born infants are diagnosed with these severe anomalies have options beyond either abortion or compassionate care.

But will screening for CHDs at 24 hours of life via pulse oximetry really make a difference?
Yes, it will.
We also have that data now too. Not everyone knows. Creating laws, legislations, protocols, and/or mandates creates the energy by which new education will increase the working knowledge of frontline clinicians...and with some meaningful speed.

Beyond that - it's common sense. In Pennsylvania newborns are screened for all sorts of metabolic conditions and genetic anomalies that are much less frequent that CHDs.
The 6 conditions in PA mandatory screening & their incidence rates:

1. Phenylketonuria (PKU) 1 in 10,000-15,000 Mental Retardation
2. Maple Syrup Urine Disease (MSUD) 1 in 100,000 Death
3. Galactosemia 1 in 50,000 Death
4. Sickle Cell 1 in 400 for
African Americans Death
1 in 10,000 for others
5. Hypothyroidism 1 in 3,500 Mental Retardation
6. Congenital Adrenal Hyperplasia (CAH) 1 in 15,000 Death

Yet, we do not screen for CHDs. In addition to being the most common birth defect, CHDs are also the leading cause of death of children under the age of one year old.

If there is a choice, if there is an option for care, shouldn't a parent be given the option to try and get their child to at least 1 birthday?

From the University of Michigan:

Pulse oximetry is useful in detecting CHD before hospital discharge in otherwise well-appearing newborns. The sensitivity was 60% and specificity 99.95%, giving a positive likelihood ratio (LR+) of 6765 and a LR- of 0.4.

The false positive rate is low and does not lead to an excessive number of unnecessary echocardiograms.

The percentage of infants with significant CHD detected is similar to or greater than other conditions tested for on the newborn metabolic screen.

Whether easy detection of CHD results in lower morbidity or mortality is speculative. Recommendations to screen or not to screen are dependent upon this answer.

Further comment on the research found:

Wren, et al. report that more than half of babies with undiagnosed CHD are missed by routine neonatal examination, and more than one-third are missed by six weeks.2

Reich, et al. report that routine pulse oximetry in newborns before nursery discharge was 99.9% specific; there was no increase in the number of echocardiograms performed in contrast to a comparison group.3

Screening with pulse oximetry did not generate any abnormal echocardiogram findings.1,3

One should take into account the added expense, time, training, and labor involved with routinely measuring pulse oximetry in all infants in the newborn nursery.

Authors acknowledge that this study does not compare outcome of patients with significant CHD who were asymptomatic as newborns diagnosed before vs. after discharge from the newborn nursery.1

So today's take-home messages:
- No, pulse oximetry screening in newborns will NOT catch every CHD.
But it WILL catch more than not doing it at all.
- Passing pulse oximetry screening for detection of CHDs legislation will not create clinicians that all of a sudden understand there is a law, or that there is an evidence based need and reason to perform it.
But it WILL create a ripple whose effect will be to create more curriculum around the need to "teach to this test".
- CHDs are the most common birth defect. 1 in 100 babies are born with a heart defect. Not all are critical. Not all need immediate interventions.

AS more CHDs are diagnosed at birth and in the neonatal time period, it will be critical for clinicians to exercise great caution. Parents/family must remain a full partner in any treatment and decision making plan.

A Living Exhibit

2011-06-09T04:21:00.000-07:00

The Walking Gallery on Tuesday evening at the Kaiser Permanente Center for Total Health in Washington DC was beautiful.

I started my day admiring exhibits at the museums along the Mall in DC. The Mall is full of stuffed, molded and representations of our American, Natural, Aviation, Fine Art history as well as monuments to the people in our history that we admire. To end it as part of a living mural was ironic - it was a living, breathing, (and walking) exhibit to the nearly 100,000 American lives lost each year to medical errors. Ironic, really.

The Walking Gallery from Eidolon Films on Vimeo.

In the past few years, I have developed and implemented curriculum on patient safety and communication in medicine. One goal is always to make it fun for the participants. I have even gone so far as to throw little bags of Swedish fish to the participants to engage them (ever read the book, "Fish"?) It is tough to make medical errors and patient safety education fun. Regina Holliday made a very powerful, tender and moving event fun.
It was such a moving event, I have been speechless trying to describe it. Then I read this quote today by a doctor. I think it pretty much sums up everything we represented at The Walking Gallery, everything I advocate for in medicine, and the only way we will regain a trustful physician-patient relationship.

“Health is not a commodity. Risk factors are not disease. Aging is not an illness. To fix a problem is easy, to sit with another suffering is hard. Doing all we can is not the same as doing what we should. Quality is more than metrics. Patients cannot see outside their pain, we cannot see in, relationship is the only bridge between. Time is precious; we spend it on what we value. The most common condition we treat is unhappiness. And the greatest obstacle to treating a patient’s unhappiness is our own. Nothing is more patient-centered than the process of change. Doctors expect too much from data and not enough from conversation. Community is a locus of healing, not the hospital or the clinic. The foundation of medicine is friendship, conversation and hope.”

~~David Loxtercamp

The remainder of what I said in my own, little 8 second interview Tuesday evening went something like this:
"So now through James's Project I share as much as I can books and education for infant caregivers (both parents and clinicians) to effectively advocate, educate and collaborate so they don't have a similar tragedy."

What to Do When the Pediatrician Says, "No"

2011-06-06T17:58:00.000-07:00

So you just found out you are pregnant. Or, maybe you have known for a little while and are just starting to pack your hospital bag. Maybe you are not pregnant but you hope to be someday. This is for you. It is a must-read and a must-save.

There are alot of books and classes and media to help you get ready for baby. LaMaze, Baby name books, mother in laws, friends, Parenting magazines, The View, etc etc. Each has a helpful piece of information. You learn how to breastfeed, change a diaper different methods of getting baby to sleep, how to supplement with formula, how to select a formula, the best spacing for siblings, what kind of suncscreen to use, how to introduce new foods, debates on vaccinations, and if a baby needs shoes. None of these resources are preparing parents to successfully navigate their newest addition through the complexity of our modern day healthcare system. Obamacare, Medicare, Insurance, public, private - whatever it is it won't feel like it matters when the baby arrives. It really won't matter if the baby never arrives home.

Dennis Quaid's twin babies had a near miss event. My son exemplified the Swiss Cheese theory in medicine. Many of you are probablywondering what the heck I am talking about. Read on so you don't learn the way Dennis and I did.

Today, I was asked a question I get alot. An expectant mom who has heard about the benefits of a pulse ox screening asked her obstetrician (OB) directly about getting one for her newest addition. The OB was unsure and referred her to the insurer. The insurer responded with a classic standard first denial: insurance won't pay inless there is good reason for it. The question, "What can a mom do?"
While the content is specific in this example (pulse ox screening on a newborn after 24 hours of life to screen for the number 1 birth defect - congenital heart defects, the model of how to successfully navigate regardless of the question remains basically the same.

1. Regardless of the content of the question, the physician should also be able to advocate for the test or screening if he/she believes in it. Oftentimes, physicians are not as up to date on improvements & advances in obstetrics and neonatal care as we all expect them to be. They are just doctors, they are not superhuman. Every expectant parent neds to acquaint themselves with successful patient advocacy strategies for their hospital or birthing facility visit. (Shameless plug - James's Project offers Rattle Wraps:Patient Advocacy for Infant Caregivers,How to advocate for yourself and your child during pregnancy and the first year of life. Attend in person and soon via online webinars. Email maryellen@jamessproject.com if you would like information on upcoming sessions.)
Even though it is established that pulseox screening is a cheap test (generally costs less than changing a diaper in a hospital) what the hospital will actually charge will vary from institution to institution and provider to provider as a result of reimbursements rates and provider contracts, etc.
Moms, Dads, Guardians need to keep after the physician to just get it done.
It will probably be done upon delivery but may not be recorded. Because of the new NRP (neonatal resuscitation protocol) many NICU warming beds are having pulse oximeters fitted on them if they don't have them already. Its just a matter of someone putting the device on the baby's heel after 24 hrs of birth.
SO here is what to do:
1. The mom/dad/expectant guardian should tell the OB & pediatrician that she has read the information from the Secretary's Advisory Committee on Newborth Health Disorders. As a result she/he wants a pulseox read on her/his baby after 24 hours. Ask the physician/clinician to write it it in her file/records. When she arrives she can tell the labor & delivery nurse the same thing and then just ask if she knows whether or not the infant warmers are already fitted with the pulse oximetry units.
2. On Day 2 of life, ask the nursery nurse if the pulseox reading has been done yet because she wants to be there for it. Mom can go down to the nursery, hold her new baby, sit in a rocking chair and ask "Can I just wait here until you have time to do the pulseox on my new baby?" If they say no. Then simply ask, "When would be a good time? I just want to have it done before we are discharged."
3.If refused again, when the pediatrician comes and gives his report on the baby before discharge ask him/her, "Can we go down to the nursery and do the pulse ox now?" He hopefully will say he just did it and what the reading was. Mom should ask for a copy of the pediatrician's hospital notes on the baby before discharge.
4. Finally - if all that fails and they are still refusing - she should call the hospitals patient advocate office (a number she should learn and write down BEFORE being admitted). The advocate should be able to assist getting this done before discharge by clearing up any communication breakdowns between clinicians and the baby's family.
5. If that fails? Call the Hospitals Director or VP of Quality & Safety - yup, another number to have written down on that phone list BEFORE being admitted).
6. Still failing? Call a patient advocate. You can always call me. However, there are many helpful ones across the country. A good place to start looking is at The Empowered Patient Coalition.
There is no reason why any baby should be discharged without a pulseox read after 24 hrs of life when the parent/caregiver has requested it. Period.

Back to my buddy Dennis Quaid and I - yes, you are right - I never met him. But we do share something in common. Our newborns suffered preventable medical errors. The Quaid twins were given 1000x the prescribed dose of heparin. They bled internally and nearly died. Thank heavens they did not. My son was given a dose of morphine that he should not have had, was on a broken ventilator, and was taken off the ventilator before recommended. All the holes lined up and he fell right through. He did not survive. Dennis Quaid and I are now outspoken advocates for patient safety. For healthcare safety.

Oh and also remember he the three "P"s - Patience, Persistence, and Politeness. :)

Books & Paintings - Ways to Save Lives

2011-06-05T21:39:00.000-07:00

Tomorrow I am headed to DC for the week for the opening event of Health Innovations week.
The Walking Gallery will be held from 6PM-9PM in the Kaiser Permanente Center for Total Health.
We won’t pound a single nail into the walls to hold the art. This shall be The Walking Gallery. That night dozens of people will walk into the space wearing business jackets or doctor’s lab coats. That alone is not unusual. It would be a daily occurrence in this dual-use space. But these jackets will be works of art. Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist. These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists. It shall be a great meeting of the minds.
-Regina Holliday

What an honor it is for me to be a part of this event. Regina took some photos I have of James, listened to some of our story and painted my jacket.
- "Never Enough" by Regina Holliday

As a lifelong teacher (and as such, learner) I appreciate that storytelling is an effective way to understand each other. When given the chance to sit down and actually talk freely with clinicians involved in James's care (6-8 years after his death), I understood more the complexity of healthcare delivery. They began to understand more of why I ended up with a lawyer. I just wanted to know what happened.

Those early sweet memories of new life should remain the first of many; not the last. I am glad to have a few photos of James and how he was thriving and doing all the new baby things expected.

The title of my book is a quote from the motion for mistrial arguments in James's case. Trying to explain and make sense of the verdict in the case, negligent but not responsible, the lawyer used the term "split the baby".

Oh, The Things a Heart Can Do!

2011-06-05T18:34:00.000-07:00

Nels Matson is 28 and was born with a congenital heart defect. The number 1 birth defect that affects 1 in 100 live births.
He is cycling from California to New York again this summer to raise money for research.

You may recognize this open heart surgery survivor as an Olympic gold medalist. Meet CHDer Shaun White.

Tiny dancer born with half a heart, Hypoplastic Left Heart Syndrome. A couple weeks ago Lily (age 5) wowed her mom, dad and grandparents in an Academy of Music-worthy performance to the music from "Tangled"!

Born with a heart defect, built an Ice Castle, became a Beast, then a Prince survived two open heart surgeries. Yes, that is the 70's heartthrob, Robby Benson.

Yes, there are many people born with heart defects that do not survive past their first year of life. Many have passed because despite the increase in fetal ultrasound use, the heart defects are never diagnosed.
My friends daughter, Cora was diagnosed by the coroner. Had she been diagnosed when she was living, her parents and treating clinicians could have had a chance to collaborate and decide on a course of treatment. The same way parents and clinicians of pediatric cancer or diabetes or other medical conditions work to save young lives.
PulseOx screening on newborns after 24 hours of life is a best practice for patient safety in pregnancy and newborn health.

James has passed but it was not his CHD that took him. Unsafe care did.
The number 1 birth defect has warriors and tools now. The warriors include patients, families, parents, social workers, and clinicians engaged and dedicated to the safest practices in medical care delivery.

Be a part of the movement.
Move your body.
Speak your mind.
Wear your heart on your sleeve.
It's beautiful regardless of its shape!

PulseOx 4 All!!!

Book Donation Program Keeps Growing

2011-06-04T04:17:00.000-07:00

Books constitute capital. A library book lasts as long as a house, for hundreds of years. It is not, then, an article of mere consumption but fairly of capital, and often in the case of professional men, setting out in life, it is their only capital.
~Thomas Jefferson

I wrote the book, "Split the Baby: One Child's Journey through Medicine & Law" for med, nursing, and law students as well as healthcare professionals eager to continue learning about communication and successful collaboration.
I would give my book away to the industry's students and future professionals. A sure fire way to make sure all stakeholders are a part of the medical education process. I still do.
In October, I opened it up to include other quality patient-authored books - Books for Medical, Nursing and Law Students.
The response from authors was amazing. Many many authors offered to include their books in the program. View see a full list here.

The response from medical institutions has been positive, but slow. There are many hoops to jump through to formalize the inclusion of any book in any curriculum. I understand. We will get there.

To speed things up James's Project will give the books offered directly to students. All they have to do is request one. (Send a request to webmaster@jamessproject.com)
I have sent so many out, I am now out of books. Time to get more.

I started looking at my budget and seeing how and where I can buy more. And then I received an email from Kenya, Africa. This budget needs to stretch!

The Muinde Kaviri Foundation heared about James's Project Book donation program and asked if we could send some to them.
In the following days crazy weather touched down across the south and midwest and entire communities lost everything including books.
These communities need books to help educate their children and future professionals.

I put out a call for anyone who would like to donate books to let me know and I would come pick them up. I was only expecting people in my area to hear my plea. Yesterday I received some boxes full of gently used books from Alabama and more from Massachusetts.

If you do have books you would like to send there are two ways to donate:
1) Just call me if you are in the tristate area (PA/NJ/DE) and I will pick them up.
2) Message me for my address and you can mail directly to me.
or just
3) go ahead and mail them directly to one of the needy groups. (I would really appreciate it if you would please let them know your donation is on behalf of James's Project, USA)

Executive Director.
The Muinde Kaviri Foundation
P.o Box 238 Code 90400
Mwingi,Kenya(East Africa

North Highlands Elementary School
ATTN: Michelle Wilson
2021 29th Ave North
Hueytown, AL 35023

I will update this blogpost when we receive an address to send books to schools in Joplin, Missouri.

If you would like to help with the cost of shipping books please send an email to maryellen@jamessproject.com. Everything is appreciated. Even if all you do is share this information, you will be helping to increase compassion and understanding for our future generations across the globe.

Thank you!

Learning in Medicine CAN be a Ton o' Fun!

2011-05-29T07:26:00.000-07:00

During the three years after James's death, we raised money for The Make A Wish Foundation in his memory.
The Phillie Phanatic was among many who came to The Skatium in Havertown to have fun celebrating a birthday so sick children could too.
I knew I had to do something in 2001, 2002, 2003. Yet, I didn't know yet what happened to James so I didn't know where his memory could best serve. Since James's dad, had already had a position as a Wish Granter, it definitely fit.

The puzzle pieces came together after the additional challenging experience of litigation. It was tough. But without it, we would never have known about broken medical equipment, the impact of poor hand off communications, medication errors, and the paralyzing effect silence has in medicine.

James's memory best serves to improve our infant mortality rate by improving communication before, during and post healthcare outcomes.

Learning and sharing does NOT have to only come from litigation anymore. It can be a ton o' fun!
So that is the plan for the 10th birthday which will be here in 5 short months.

Education. Communication. Collaboration.
It starts with learning and reading.

James's Project donates books to medical, nursing, and law students. Books are also donated to NICU families.

This month you can also get your hands on some good summer reading!
JP will give away children's books, healthcare related titles, and fun paperback beach reads!

So, for your chance to receive some free, fun summer reads "Like" our new Facebook page then share the link on your FB Wall! JP is also on Twitter. You can follow James's Project and re-tweet the giveaway information for your chance there (One winner will get TEN free title through Twitter).

(JP was also thrilled to receive a direct request from the Muinde Kaviri Foundation in Kenya! We are donating an assortment of books for their use, as well. Know students who need books? Let us know by emailing webmaster@jamessproject.com)

The MIlitary, the Aviation Industry and YOU can Save A Baby's Life

2011-05-27T15:51:00.001-07:00

Safety First!

When James was born in 2001, the patient safety movement was just being born out of the effects of The Institute of Medicine's 1999 report, "To Err is Human." James and so many of his fellow NICU and CICU classmates never had a chance. Babies born today do.

Just Call Me Joe

2011-05-17T20:27:00.000-07:00

Last week, I visited our local hospital to see a friend who was unexpectedly hospitalized. Between her having been the main caregiver for her mom in her final days and my friend's ongoing health issues, this woman is a very good example of an empowered patient.

She knew to ask the nurse when being given medication, "What is this and why are you giving it to me?" She also knew to ask, "Can I please see the original bottle this came out of before you put it in this little cup?"

However, she did preface her questions with, "Okay, I am going to be a really weird here and ask you some questions."
After receiving the questioning with forthright answers and appreciation for my friend's investment in her own care, the nurse explained she LIKES when patients ask questions of her. The nurse didn't find it weird at all.

It was a privilege to see such a successful exchange between nurse and patient. (Hopefully, the nurse does not have to wait for the patient to ask these questions all the time. It is information worth volunteering, so that patients who are not so empowered will come to expect this level of engagement.)

After the nurse left I applauded my friends actions. My friend said she knew she needed to do this. However she shared she would never question a doctor that way.

She shared that earlier in the day a doctor came in to discuss her tests and the doctor had a foreign name which was tricky for her to pronounce. So before she said anything, she asked him," Sir, please tell me how to pronounce your name."
The doctor replied, "Please call me Joe. I prefer that."
She responded, "Oh no I will not. You spent a number of years in school to earn that 'MD' at the end of your name. That surely deserves the respect of the title 'Doctor' and me being able to pronounce your full name."
She said he again said his last name, expressed appreciation for her compliments, but he also repeated, "Honestly, please just call me Joe. It is my name and what I prefer."
Again, she said she would not.

Now this is a different level of noncompliance.

It made me wonder how many times patients make the job harder for a clinician by putting this human being on a pedestal they don't want to be on.

How often do we miss an opportunity to connect with clinicians because we don't allow them to be human with us?
How much does this leave the clinician feeling they must stifle their human reaction to daily events at work that are emotionally exhausting?

Two days ago, a little baby named Corbin died after a long hospitalization and heroic measures. The mom generously poured her heart out to the world yesterday about her child's final moments.

She describes how a nurse took her by the hand and led her over to hold her son's tiny hand while the clinicians were performing CPR. The doctor put one arm around mom as his other was doing compressions on her son.

The strength of character needed for any person to guide a mom through her shock to be a part of her child's death journey is awesome. I have seen that strength happen in all walks of life when death is near.

While a difficult scenario indeed, those two acts of human compassion (one from the nurse, the other from the doctor) are reminders that MDs, RNs, PAs, and all the others with initials at the end of their names are people. They are moms, dads, sisters, brothers, friends, weekend runners, churchgoers, bathroom cleaners, and errand runners.

Let's just call them "Joe" when they ask. Chances are it allows them to remember that death is a part of life.
And at those times, it is not the clinical training that guides action,but our shared humanity.

(Read baby Corbin's journey to heaven here.)

Keep trying, the babies are worth it.

2011-05-17T17:00:00.000-07:00

Not too many people really know me. Even though I have chosen to wear my heart on my sleeve.

I write honestly and publish where anyone can read it.
I can be opinionated. But, my experience in medical error and medmal litigation comes from experience, not just opinion.

I struggle editing my thoughts when the lives of babies, children, and families hang in the balance. When the patients fall through the cracks in our healthcare system, our clinicians usually follow.

I cry too easily.

I forgive rather quickly.
I can't forget anything.

But ever since my son died, not too many people really know me.

People have described me as strong.
But I am constantly, falling on my face.

People have called me forgiving to a fault, while others consider me unforgiving.
Someone - a nurse - even said to me that I am a "veiled threat to the medical community."

Well, I am weak. I forgive easily. I work for fewer doctors to be sued by sharing what a patient's family may need to hear from a doctor after something goes wrong. I also spent a solid year of weeknights and weekends learning techniques in conciliation.

I have a good memory. Good enough that I remember all the good times I had with the same people that caused unintentional hurt after James died. Those memories kept me trying to repair the relationships that broke after James was buried.

I fail. Alot.
I keep trying when my knees stop feeling the sting.

And today, I huddled with other patient safety advocates hoping that babies wouldn't died.
That another mom wouldn't feel so unable to connect with her own family after the funeral was all over.

I worked to try and gain commitments from local hospitals and healthcare providers to collaborate with James's Project to improve care and lower costs for babies and families in Pennsylvania (and elsewhere).

Then I heard little baby Corbin died.

I know there are a bunch of little Corbin's out there today.

And as the last nurse who cared for James said, "This sucks."

Now you know me.

I failed.
It stings.

I will keep trying.
Will you help?

Please.

How Reliable are the Rankings of Children's Hospitals?

2011-05-17T14:45:00.000-07:00

My Facebook Newsfeed and Twitter feed have become clogged with links to the US News magazine's rankings of pediatric hospitals. Certainly most if not all of these are solid institutions for safe care of children. However, not one of them could possibly claim itself free of preventable medical mistakes. A few weeks ago one mom whose child died in a hospital from what she understood as a preventable medical error pondered with me how it could be that her child died in the same place where another parent had raved over the great care for her son.

I also continue to hear parents query me personally and through social media: "How do I find the BEST doctor/hospital?"

According the rankings, the children in Pennsylvania should not need to cross a stateline to get the best possible care for their ailments. Children's Hospital of Philadelphia and The Children's Hospital of UPMC (Pittsburgh) made the Honor Roll this year at nos. 2 and 9 respectfully.

While these rankings may be a place to start, parents cannot merely rely on popular and trade magazines that cannot offer statistical research based evidence for patient safety in pediatrics. There is no standardized measurement for pediatric patient safety. In the explanation for the methodology for these rankings the magazine reveals much is dependent on self-reporting:
Since 2007, when quality-related data was first added to the rankings, children's hospitals have been asked to fill out a lengthy clinical survey—95 pages long for the 2011-12 rankings.

There is no pediatric equivalent of the enormous government-run Medicare files that U.S. News mines for much of the data poured into the annual Best Hospitals adult rankings. Children's hospitals are still thrashing out standards describing the kinds of data that should be collected to determine quality of care and how to analyze the information. The health reform law requires development of such performance standards, but it is likely to take several years for pediatric versions to take shape.

Whereas many states, including Pennsylvania, have made it law for hospitals, nursing centers and others to report infection rates none have made it mandatory for pediatric facilities. They continue to fall under the category of a "specialty" which excuses them from reporting requirements. Among the institutions that have been required to report (specifically in Pennsylvania) in their 2009 Annual Report the PA PSA revealed there were wide disparities in reporting from facilities. Self reporting has not been found reliable in healthcare.

The Authority believes that implementation of this limited set of principles will reduce a portion of the reporting volume variances between facilities. However, these principles do not address all definitional issues that result in reporting disparities. The Authority is considering working with reporting facilities and professional health care organizations to address additional issues regarding patient safety event definitions and reporting.

When US News reveals the methodology of their rankings involve heavy reliance on self-reporting, these common issues of discrepancies should be considered. Without oversight, pediatric patients remain in danger.

The Pennsylvania Patient Safety Authority's Annual Report for 2010 included examples of why patient safety issues should lead parents decisions on care choices for their children. Best practices in patient safety (everything from handwashing and communication to reducing wrong site surgery and hospital acquired infections) should be a parents first point of reference as to what is the best care provider for their sick child.

From the Pennsylvania Patient Safety Authority's 2010 Annual Report:

Signs of Safety Improvement in Pennsylvania’s Healthcare Community reports on a significant and continuing reduction in Pennsylvania malpractice claims (distinct from structural changes in the law) running counter to national trends exhibiting increases in malpractice claims. In addition, reductions have been seen in the severity of wrong site surgery (WWS) events, and a 72% WSS reduction was demonstrated in the recent HCIF sponsored WSS collaborative. Furthermore, evidence of Pennsylvania reductions in hospital HAI, central line-associated bloodstream infections (CLABSI), and blood specimen labeling errors add further weight to the successes of Authority patient safety programs. Finally, Pennsylvania hospitals‘ grassroots effort to standardize color-coded wristbands has become the de facto national standard.

The Patient Safety Authority Product Value Analysis demonstrates that certain commercially comparable products and services provided without charge by the Authority to Pennsylvania facilities (and in some cases to the broader patient safety community) have an estimated market value ranging from $5.4 million to over $10 million. These results suggest that these products are generating a significant recovery against the annual assessment of $5.8 million. These products and services, the PA-PSRS software applications, the Authority‘s educational courses, and the Patient Safety Advisory publications, account for less than half the total effort of the Authority and its contractors.

Because of the new healthcare law, a new payment structure will be heading to all the hospitals in 2013 and 2014. Accountability for care will add up to billions of dollars in reimbursements. (James's Project has pledged publicly to collaborate with hospitals and businesses to improve care and lower costs for patients.) Many sick children are on Medicare. These issues should be highlighted now in any national ranking of pediatric hospitals. Parents should also become involved in pushing for transparency and reporting in pediatric healthcare in the United States immediately.

Pennsylvania's pediatric patients are overall in good hands. However, in each of these huge healthcare systems there remain significant holes through which the sick children and their clinicians can slip through every day. Until mistakes and successes are equally reported with standardization and with transparency, parents need to continue to be highly critical thinkers and decision makers engaged in their child's healthcare decisions.

Moms, Forgiveness, Friendship, and Saving Babies

2011-05-05T19:29:00.000-07:00

For the seventh year, The Peace Alliance is reminding us that Mother's Day came about from the passion of grieving moms who work towards peace. Read more about the history of Mother's Day here.
Today, I join them and ask legislators and health care leaders to give peace a piece of the pie. Investing in peace both financially and in practice will save lives and save money.

Every Mom Counts is working on saving Moms and Children.

An Unimaginable 9/11 Mom Friendship Encourages Peace

Read a Book - Save a Life

2011-04-30T20:07:00.001-07:00

Give a person you love - yourself - and any other a good book for Mother's Day.
At the same time know you are helping to reduce infant mortality, empowering patients, helping and international peace mission, and increasing awareness about the most common heart defect. Yes, you can do all that with just one book.

People allow you to grieve in direct correlation to the size of the casket. Because babies are small their deaths are not as appreciated as we would like to say they are. Your infant has a better chance of surviving if born in Shanghai than if born in the States. That is dreadful. I wrote the book to open eyes and hearts to the realities and possibilities in healthcare. In honor of Babylost Mothers Day (today) and Mothers Day (next Sunday), the book is available as a free download for the week - with a donation to either Operation Healing Hearts (saving heart babies in Iraq) or The Empowered Patient Coalition (saving patients in the US). I hope you will share the link I provide and encourage a healthy readership for this short time it is available.

Today is International Babylost Day which honors moms whose babies have died.
Next Sunday is Mother's Day in the United States.
This is a week to remember how Mother's Day came to be. Here is another good Mother's Day read.

In honor of Mother's Day, "Split the Baby: One Child's Journey Through Medicine and Law" is being made available as a free download. Through a donation to Operation Healing Hearts and/or The Empowered Patient Coalition, you can receive a link to download the book online.

Learn how to read it this week here.
Just three steps to your free download -
1. Click on one of the following two links to make donation.
Operation Healing Hearts and/or The Empowered Patient Coalition2. Send an email with your donation confirmation to webmaster@jamessproject.com
3. Receive an email with a private link and instructions on downloading the book!

There is always healing that can be done. Even in the most dire of situations. In healthcare two people have a relationship that needs to be tended to.
I look forward to sharing with you a companion book to "Split the Baby" about healing in healthcare after medical errors. Peace is possible.

An Example of Family-Centric Care in America

2011-04-28T11:43:00.000-07:00

Looking for relationship centered care which is family-centric in American medicine?
I found it. It did not come about through any hospital CEO, nonprofit organization lead, legislator, physician, nurse, social worker, or international health care quality forum. While they each had a part, the transdisciplinary collaborative environment she has been able to create for her son's medical care came about through the determination and unselfish love of a mom for her son.

Marti is a twenty-something mother to two children. Her youngest was born with a birth defect and lives his life with the help of a ventilator. (You can read more about his life here.) He will be 2 in June. He learned how to walk this winter while dragging his ventilator around the house.
Mom calls him "Mavs", short for Maverick. Ironically, his mom is a true maverick with the strength and determination she has mustered to be able to look at her family, honestly determine what their needs are, and find a way to get it even when people would rather not talk about it.

In the past couple of months, Marti realized she will plan for the best and be prepared for the unimaginable. She took a courageous step and looked into funeral arrangements for her son.
The following is re-printed with Marti's permission. She wrote it today as a note on Facebook.

"Well we did it, a day early...Funeral....We were unaware that his insurance will give a 1000 death benefit, so that's a start and the fundraiser will help. We plan to have a service with viewing, cremation after service, then we will have him buried so we can have a place to visit him, and allowing us to keep some of his ashes, and then get a headstone. Not something I even want to image, but I do feel better knowing what our options are, and I feel good about the plan. Now we pray that God will allow us years and years with him, and this plan will not have to be used. I just never want to go the cheap way because we cant afford something beautiful for him, I will do whatever it take to make sure his arrangements are taken care of.

Second, his cardiologist has strongly said he wants his cardiac surgeon to do the lung biopsy and heart cath with his heart cath dr. This way he is safer because general surgery normally can do the lung biopsy but because his lungs are so bad and the way his brochial tubes enter he wants to be very careful with this, and allowing him to be in the cath he can see where he has already surgically repaired his arteries and if anything can be done in cath or will they open him. And we have firmly said after his 2nd birthday in June. So next week we will go to the OR with his new ENT doctor where he will try to go through the existing trach site and remove the skin tract that is collapsing in his entire upper airway, if he is unable to do this we will have to plan for the big operation where they remove his trach, place breathing tube in mouth, and then full Reconstruction of the trach like before(opening his chest) then re-traching him. Oh do I pray next week will be enough and we can get in and out, beings he isn't doing much invasive it is really a fast OR and we should be out that day beings he doesn't have to come off a ventilator.

We had our nursing meeting yesterday, things are looking good there, I will be the one training them and together we have to meet State Guidelines with our home and him, and they are hiring a nurse just for him, and once I feel comfortable with leaving; this will give me some time out of the house and we choose some evenings for Brandon and I to have alone time and date night. I think it will be nice but I am nervous.

We are also ordering 2 heaters for his ventilator one that will mount to his wheelchair making him able to be outside the house for more than 2hrs a day, also along with that a vent battery pack with inverter so we have power, and because Maverick is on so much oxygen and with the recent going unresponsive while of it for maybe 15 minutes when we ran out he is getting a battery operated portable concentrator, this way we wont have tanks or worry about having to fill the liquid, and it can be charged on the inverter or through the car. Allowing him almost complete freedom. However these are very hard to get and very expensive 4000, but our Angel with Medicaid approved it all for us. He is determined to give Maverick the best life possible too.

Its truly amazing the people that are jumping through hoops to support us and giving Maverick the life he deserves outside the hospital. As I talked to his pulmonologist this morning everyone there understand us as parents and knowing Maverick future is hazy so they are letting us call the OR shots as long as its safe for him and keeping him home with us, and she again told me how proud they are us of doing this alone and Maverick is one of the sickest kids they see however he is also the one doing things most cant or things they Never expected him to do. She was also happy to hear we listened to her and got the funeral arrangements started. And funny thing is we have come so close with his medical team, they are like our family and the love and compassion they have for him is outstanding, even his pulm dr Emily Debor and her husband are coming for Frontier Days with us. I simply in one word can say I LOVE her.

And I love all of you, standing behind us, supporting and caring. Wanting to help in anyway you can, those who bring us dinner, ones that take Taylor to play even his therapist are involved with her, the calls the texts the love. Its outstanding what great people have enter our lives because of Maverick, the miracle baby I am so glad to call my son."

You can reach Marti at gonzalezm1016@bresnan.net.

Exploring Forgiveness, Healing, Hating and Time

2011-04-27T02:16:00.000-07:00

"Forgiveness begins and ends with one person facing another."
(From Forgiveness: A Time to Heal and a Time to Hate)

When a child dies, or a doctor is sued for malpractice, or a NICU nurse doesn't measure out the correct dosage of medication, or a parent chooses religious beliefs over medical advice in the care of a child, or a parent wants to know what happened when their son died, people who want to help smooth the pain will eagerly suggest forgiveness.

A powerful program on PBS this month explored some of the world's most unimaginable acts against humanity...and how those how harmed manage their pain and anger. From Germany to Rwanda to the little school house in Lancaster, PA and within the heart of a broken family, forgiveness and its validity are explored.

While health care is full of data and research and science, it cannot forget that at its core it is about one person standing with another person. That touchpoint of care is a relationship.

Mending broken relationships is not easy and often may be impossible. I find that it is a matter of how much two people each want to mend it. Sometimes while we can forgive, exposing our hearts to the possibility of more anguish - or even the reminder of the previous heartache - is too much to overcome.

But this program does a much better job of exploring this.
The transcript of the program is full of insights, wisdom and really hard questions. Here are some:
"Forgiveness can purify memory."

"Personal betrayal can cut as deep as a machete."

"Can there be reconciliation without justice?
And amidst a pain so unreal, what does justice look like?"

"In Rwanda, an indigenous process called "Gacaca" is a truly community based model of restorative justice.
One woman called it "another way of asking a survivor to do too much."

"We are made for relationships.
There is the need to reestablish a broken relationship."

"Forgiveness is a search for the healing of the ache of a heart."

"Governments can promote reconciliation but you cannot legislate it - it happens at the personal level."

"Choice is at the heart of all our actions.
Ultimately it is the individual that commits an act that causes a harm, through their own choice."

Anthony at Ten

2011-04-25T09:55:00.000-07:00

We so much wanted to keep you,

We watched you day by day,

Until with breaking hearts ,

We saw you slip away.

God watched you as you suffered,

And knew you had your share.

He gently closed your weary eyes,

And took you in his care.

Your memory is our keepsake,

With that we’ll never part,

God has you in his keeping,

We have you in our hearts.

Nothing can be more beautiful,

Than the memories we have of you.

To us you were someone special,

God must have thought so too.

~Whitney Westphal

Ten years are being marked. Yesterday, a television channel was showing a "9/11: Ten Years Later". We can anticipate much more of the anniversary of that tragic event being remembered.

I am also watching dear friends and fellow moms to babies that have died, mark the tenth anniversary of their passing.
One of the first people I "met", through my little angel was Jacquie. She was just a few months ahead of me in grief and we were able to hold on to life - I think, by holding on to each other. The Internet has been a wonderful resource for the grief communities in providing someone else to talk with late at night when you feel like you should be nursing...but the bassinet is empty.

Yesterday was Jacquie's son's birthday. Anthony would be ten years old had he not died at one day of age from a congenital heart defect.

Of the many gifts Jacquie's friendship blessed me with one was poetry. She shared words that reassured I was not crazy. I was not alone. Moms whose babies die before them are still here and it is okay to talk about them.

One of my favorites that Jacquie shared with me happened to be written by a obstetrician. This poem is reprinted on the last page of my book.

I no longer see the stars; I am the stars.
I no longer breathe the wind; I am the wind.

I am the sweet smell of honeysuckle after an
Evening rain.
I am the dew on the rose petals in early
Morning.

I am harmony and I am peace.
I am love.

In sorrow, my mother and father cry,
But they need not fear. For I am strong.
My heart is whole and in union with my soul.

I understand my fate and I smile.
For nature's will is my destiny
And my guide through eternity.

1990

A Parent's Reaction to Endless Handoffs

2011-04-25T07:16:00.000-07:00

James's Project has a Facebook page where articles of relevance are often posted for expedicy. There is a wealth of good information on medical errors, patient safety, physician-patient relationships, etc coming out in the media it is nearly impossible to blog about it all.

This weekend I shared a news story from The LA Times about the importance of hand-offs in patient care.

James's care was adversely impacted by information that was not shared during a handoff in his care. Because of that, I appreciate this often overlooked touchpoint of care. It is why I always educate parents that they can and should be present for rounds. This is an important question when searching for the "best care" for your child. Parents are a part of the care team.

Jessica Miller is the mother of a child who has been in and out their children's hospitals multiple times. She shared her thoughts on the news story. Every clinician and parent should read her experience. Her experience is not unique.

Very interesting article, we have watched helplessly as weeks went by in the Children's Hospital and attendings rotated on and off weeks (they switch every Monday morning) and watched our daughter's care and case swing HUGE pendulum swings ...in care. In less than two weeks we went from being told that oral/gastric feeding was life threatening because of her severe aspiration risk to be sent home feeding her with bottles and using her g-tube strictly for back up. Once arriving home her Occupational Therapist was horrified at the way she was positioning to swallow her bottles, and we were informed that she was destined to choke badly and aspirate if we kept up the bottle feeding. We have lived for a month praying for this Monday to come because our clinical doctor is back from an overseas trip and we pray he will help us find a safe middle ground.

We had multiple days (we were in the hospital for 21 days straight, while being sent home four times, only to have to readmitted within 12 hours of dismissal) where we were seeing a new team of doctors because the first of the month the residents change and, like I said before, every Monday the attendings rotate. Many, many times the social worker for the team knew more about our daughter than the 5 or 6 doctors that were standing in the room.

We have been left feeling isolated and alone in her care again, this is not a new feeling, but we will never grow comfortable with it. She has multiple specialties involved and is very complex and fragile in her care. We have endured 16 hospital stays in her 14 months of life, but every doctor caring for her will tell you she is fairly healthy...

Our prayer for now is to find a doctor that will look at her as a whole person and make it their goal to just help her "feel" better!!!