Wednesday, November 6, 2013

A Unique Opportunity with What to Expect

As part of SBH’s ongoing mission to create awareness for all CHDs, we jumped at  the opportunity to guest blog for What to Expect (WTE) to help educate and empower thousands of expecting readers!

As a first-time mom pregnant with my daughter, I never considered the possibility that my baby wouldn't be born 100 percent healthy. I was never nervous going in to an ultrasound or concerned when additional ultrasounds were scheduled. I assumed everything would be routine. When I was 31 weeks pregnant I learned that "routine" was not my reality. My daughter was diagnosed, in utero, with a critical congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), which essentially meant she would be born with half a functioning heart. That day (and every day since) my eyes have been opened to a whole new world that I didn't know existed.. 

Congenital heart defects (CHD) are found in approximately 1 in every 100 live births in the United States. CHDs range in severity — some requiring immediate surgical intervention after birth and some may only need monitoring as the child grows into adulthood. Regardless of severity, the key to increasing survival rates and decreasing complications in children born with CHDs is early detection and diagnosis.

The first opportunity for diagnosis is through pre-natal ultrasound. Detection is not always possible during anatomy scans however here are a few questions you can ask your sonographer for a more in-depth look at your baby's heart (provided by Boston Children’s Hospital)  

1.       Do you see 4 chambers in the baby’s heart?
2.       Are there two upper chambers (left and right atria), each with a valve controlling blood flow out of them?
3.       Are there two lower chambers (left and right ventricles), each with a valve controlling blood flow out of them?
4.       Do the two vessels leaving the heart (aorta and pulmonary artery) cross each other as they exit?
5.       Is the wall between the two lower chambers intact, without any holes?
6.       Is everything else in the heart normal?
If the sonographer is uncertain or replies no to any of the above questions, ask your OB to refer you to a  fetal cardiologist as soon as possible.

If the sonographer is uncertain or replies no to any of the above questions, ask your OB to refer you to a fetal cardiologist as soon as possible.
The second opportunity for diagnosis is at birth. Many babies with CHD are born with no signs or symptoms of a heart defect. My daughter scored a 9/9 on her APGAR. Had we not known about her fatal heart defect before birth she could have fooled us all into thinking she was a healthy newborn.

For this reason, many states (37 as of today) mandate a newborn screening test called Pulse Oximetry to detect critical congenital heart defects. Pulse Oximetry is a completely painless, noninvasive test performed typically within 24 hours of baby's birth. This test provides a reading of oxygen levels in the newborns blood. If the oxygen levels come out lower than normal range that could indicate a problem and the baby would be referred to a cardiologist for follow up. This very simple test is literally saving the lives of babies born with congenital heart disease across the country! Here is one baby whose life was saved by pulse Oximetry testing.  Here’s another one.  And here.  And here.   

While many hospitals across the country are already performing this test, not everyone is. When your baby is born ask your nurse for a Pulse Oximetry test to be done. Hopefully, they are already offering the screening, if not you can educate them on the importance of screening for heart defects and share the success stories linked in this post.

If your baby is diagnosed with a CHD, know that there is hope and a vast community of families to support you. Aly and I are four years into our CHD journey and life is wonderful. We've had our rough times but we couldn't ask for a better quality of life for our daughter, who amazingly lives with half a heart.