Critical Congenital Heart Disease (CCHD) accounts for 27% of infant deaths that are caused by birth defects - the most common birth defect in the U.S. Early detection is key, which is why advocates across the country are speaking up for a simple, life-saving test for all newborns.
Pulse oximetry screening is a low-cost, highly-effective, and painless bedside test that can be completed in as little as 45 seconds at less than $4 per baby. Already this year, Illinois, Michigan, Missouri, New York, and South Carolina have joined the growing list of nearly 30 states in which all newborns will be screened for CCHD using a pulse ox test. Most other states are either working to pass legislation this year or are developing rules to carry out previously enacted legislation. Just within the last couple weeks, New Mexico’s pulse ox bill passed out of the House of Representatives and is on its way to the Senate- and in Virginia, advocates are now urging the governor to sign the state’s pulse ox bill into law!
If we can save a child’s life, shouldn’t we? The American Heart Association is proud to work with partner organizations committed to the health of our nation’s littlest hearts – and you can help! Advocates like you are sending messages, attending lobby days and speaking out across the country. But our work is not done until every parent can take their baby home from the hospital knowing their heart is healthy. During Congenital Heart Defect Awareness Week (February 7th-14th), help us make some noise in support of mandatory pulse ox testing in every state by SHARING the following resources with your Facebook friends and Twitter followers, using the hashtag #CHDweek:
We want to hear from you! Are you or a loved one a CHD survivor? Tell us your story in the comments below…
My daughter, now three, was born in Massachusetts in May 2010. Since MA does not require testing she was not given the pulse oximetry screen. We were sent home from the hospital, she looked great, everything was fine, etc. One morning when she was 14 days old, she felt cooler to the touch but given that this was our first child, my husband and I attributed it to being new parents and not putting enough layers on.
It randomly happened that later that morning she was already scheduled to see her pediatrician for the two week checkup. We went to the pediatrician's office, where our doctor took one look at our daughter, put a pulse oximeter on her, and declared that we were going to the emergency room immediately. Ten minutes after we arrived in the ER, my daughter went critical. She was on life support for the next eight hours while the doctors tried to figure out what was wrong. Finally, they determined that she had a coarc and the ductus had closed, and she was transported to Children's Hospital where they performed emergency open heart surgery.
Three months later, we were back at Children's Hospital for a checkup, and our cardiologist determined that her aorta was closing again. She went in for a balloon dilation but came out with a stent. Obviously a three month old having a stent is not ideal, because it has to be dilated, replaced, etc., as the child grows.
Three years later, our daughter is indistinguishable from the other children on the playground, and you would never be able to guess of her stent or her various other heart issues by looking at her. She had Early Intervention services as a baby and toddler, and her brain and motor skills are age-appropriate now, but they've told us that it's possible (not probable) for issues to arise later. But as a mom I live with the knowledge of that stent and those possibilities, however tiny they may be.
Please support the bill to mandate pulse oximetry testing not just in MA but in all states, and help save the lives of children everywhere.
Our grandson, now 2 months old, was born in Iowa and appeared to be healthy at birth. About 15 hours after being born, a nurse came to do his well baby check and saw that his color was not what it should be. She did a pulse ox screen and found his saturation to be low. Further tests were done to reveal transposition of the great arteries. He was quickly stabilized and sent to Children's Hospital. Surgery was performed a few days later and he was sent home 5 days following surgery. He is currently doing well and has no harmful side effects. Doctors believe he will live a normal life.
Iowa worked hard to pass legislation last year for pulse ox screening. Ir was an essential test that was done to begin the process of finding the congenital defect on our grandson. The cardiologist at Children's stated that more defects are being diagnosed earlier due to the pulse ox screening.
It is my hope that all states pass this legislation.
I made a YouTube video about my son.
He did not have a pulse ox test before we left the hospital. He has 3 of the 7 critical congenital heart defects that the pulse ox test can detect.
Feel free to share the video to help raise the necessity of pulse ox testing in a newborn screening. No baby with a broken heart should go home from the hospital.
Thank you Aimee, John, and Jen for sharing the stories of your little heart heroes and for being amazing advocates on this important issue! Your stories truly highlight the importance of early detection and mandatory pulse ox screenings for all newborns in every state. It is exactly what our state lawmakers need to hear to make that a reality.