A Devastating Loss Put to Action: Couple Advocates Heart Screening for Newborns

May 14, 2010

Good Afternoon.

To the Advisory Committee and Evidence Review Subcommittee: Thank you for your time and allowing me to share my story with you. My name is Vi Nguyen-Kennedy and I am from Colleyville, TX; I am here with my husband and brother. I stand before you today as a registered nurse for 9 years, an advocate for CHD screening and most importantly a mother with a broken heart.

Our Story: Information that the case studies / autopsy reports don’t include

I did not have a high-risk pregnancy and my husband and I did all that we could to prepare for our daughter’s arrival. We took classes, conducted interviews, reviewed information with the Texas Medical Board and read Inspection Summaries from the Texas Department of Family and Protective Services to help us choose daycare options, and secured college funds for our daughter’s future. Additionally, I changed jobs, followed the prenatal rules and performed all of the safety checks. Taryn was the 1st grandchild on both sides and the 1st great-great grandchild on my side. When Taryn was 27 days old, she suffered an unexpected cardio respiratory arrest at home and I had to perform CPR on her until EMS arrived. I remember the ambulance ride, and seeing my life fall apart right before my eyes. Taryn was stabilized at a local emergency room, and then sent by air ambulance to Cook Children’s hospital in Forth Worth, Texas. At this point, 1) SIDS 2) metabolic disorders 3) seizure disorder and 4) meningitis were all being ruled out. Later that same evening, the doctors pulled us aside and explained that Taryn had 2 CHDs (Total Anomalous Pulmonary Venous Return and an Atrial Septal Defect). The Pediatric Cardiologist explained to us that 1% of all babies are born with a CHD.

Taryn had jaundice after being discharged from the hospital. By the time she was 27 days old she saw her pediatrician 3 times and saw the home health nurse 2 times. Taryn did not have a heart murmur; she passed her birth weight by 2 weeks and also grew an inch, reaching all the milestones of a health baby. She never experienced any difficulty breathing until her “event” which doctors believe was a pulmonary hypertensive crisis. By the time we found out, it was too late and she had suffered significant brain damage. Her health declined over the next 24 hours in the PICU and we, as parents were faced with most horrific news. Surgery was not an option by the time the doctors we are able to detect her heart defects. I read many books while I was pregnant and did what I could as a woman to have a healthy pregnancy and child, but nothing prepared me for what happened or for what was to come.

I realize that there were no guarantees of her survival if Taryn’s heart defects were identified earlier and surgery could have been a possible option. To not be given a CHANCE of a better outcome is unfair and unacceptable. The lack of early detection is taking a gamble that one might find out later with only a minimal chance of having a positive outcome. Early intervention is key....you cannot fix the problem if you are not aware of the problem. Key Information Points: · Taryn’s APGAR scores were 8 and 9, and Taryn’s Newborn Nursery Medical records indicate “healthy baby” on multiple accounts. · Taryn’s autopsy results stated, “Total Anomalous Pulmonary Venous Return is a known cause of sudden unexpected infant death. In a small proportion of patients, prior symptoms may be either completely lacking or so subtle as to not raise the possibility of this diagnosis.” · According to the American Heart Association: o Congenital Heart Defects are the most common birth defect and are the #1 cause of death from birth defects during the 1st year of life. o Nearly twice as many children die congenital heart disease in the U.S. each year as from all forms of childhood cancers combined. · In the study by the AAP, “Effectiveness of Pulse Oximetry Screening for Congenital Heart Disease in Asymptomatic Newborns” published in 2003 indicates, “This screening test is simple, noninvasive, and inexpensive and can be administered in conjunction with state mandated screening”. · The recent scientific statement by the AHA/AAP “Role of Pulse Oximetry in Examining Newborns for Congenital Heart Disease” states, “CCHD is not detected in some newborns until after their hospital discharge, which results in significant morbidity and occasional mortality. Furthermore, routine pulse oximetry performed on asymptomatic newborns after 24 hours of life, but before hospital discharge, may detect CCHD. Routine pulse oximetry performed after 24 hours in hospitals that have on-site pediatric cardiovascular services incurs very low cost and risk of harm.”

Our Actions:

I stand before you as an advocate for change. But my plea is just not words. I have taken action to ensure children born with these defects have a fighting chance.

I have contacted 2 of the largest hospital systems in the Dallas / Fort Worth area and asked them to incorporate pulse ox screening after 24 hours of birth into their Care Path for Infants in Newborn Nursery.

I have contacted the AAP by sharing my story with Dr. Ann Stark (Chairperson of the COMMITTEE ON THE FETUS AND NEWBORN which has a current initiative: The Role of Pulse Oximetry in Newborn Screening for Neonatal Congenital Heart). I received a letter from a representative of the AAP. It basically said I am sorry for your loss. More research needs to be done. I was acknowledged but not heard.

I have been working with my regional March of Dimes representative (Director of Program Services, Regions 3 & 4).

I have reached out to the Texas DHHS; who referred me back to you.

I have reached out to the American Heart Association and they sent me a booklet about CHDs after my daughter died.

My husband and I formed a 501(c)(3) organization called Bless Her Heart(http://www.blessherheart.org) and I wrote a pamphlet for distribution. The pamphlet is available in English, Spanish and Vietnamese. I have reached out to the community to provide them with information so that they can make informed decisions along with their pediatricians.

We have worked with other organizations for CHD awareness and advocacy, such as Save Babies Through Screening Foundation

We have come here to ask you for your support require a pulse ox as a standard of care after 24 hours of birth; prior to being discharged from the hospital. The cost of this screening is minimal and has the potential to identify some CHDs.

Our Request: How This Committee Can Support or Advocate for Children Like Taryn

Advise the Secretary regarding the most appropriate application of universal newborn screening tests….such as pulse ox screening for infants prior to discharge from the newborn nursery.

Develop policies, guidelines and standards for pulse ox screening to reduce morbidity and mortality in newborns with CCHD.

Closing: It’s In Your Hands

How much more information do you need?

How many more years do you need to implement changes?

How many babies have to die to make a difference?

How many more families have to suffer the loss of a child due to lack of screening for the most common birth defect?

You have the power and authority to make changes which would have the greatest impact to screening babies for CHDs prior to leaving the hospital. We all do our best to make decisions based on the information that we have. Now that you have additional information, it’s in your hands to do something about it.

Founders of Bless Her Heart: Steve and Vi Kennedy

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