How is it that people don't know that congenital heart defects are the #1 birth defect, the #1 cause of birth defect related deaths? How is it that when you ask nursing students, they don't know that 1 in 100 children are born with a congenital heart defect. How is it not the first thing on a physicians mind when a baby comes in with rapid breathing and a heart murmur at 3 weeks old? As we traveled to Boston this week I spoke with gate attendants, TSA officers and drivers, none of whom knew that so many babies were born with heart problems.
People are always shocked when they hear, but they also always have a brother, cousin, friend or neighbor who have been affected by CHD. We don't have poster children. Our kids either look very healthy or gravely ill. There's no waif-like in between to tug at the public's heart strings.
I believe we have to find a way to educate people, at the very least, the medical community should know. I believe anyone who performs a fetal ultrasound should be required to take at least one intensive course in fetal echos. I believe that every ultrasound report should at the very least specifically answer the following questions without prompting from the patient:
• Do you see four chambers in the baby’s heart?
• Are there two upper chambers (left and right atria) with valves controlling blood flow into the heart?
• Are there two lower chambers (left and right ventricles) with valves controlling blood flow out to the body (aortic) and lungs (pulmonary)?
• Do the two valves and vessels (aorta and pulmonary arteries) exit the heart in a crossing fashion?
• Are the walls between the lower chambers of the heart intact?
• Is the baby’s heart normal?
Until then, print this off and bring it with you to your 20 week ultrasound.
My family and I did the AHA heart walk in Boston a few weekends ago and we were interviewed by a television crew. My daughter Faith was born with Truncus Arteriosus she was not diagnosed prenatally and went into heart failure at 7 days old and that’s when it was found and had her first open heart at 11 days old, first cath at 4 months old and just at the end of Aug had her 2nd cath. We know she will need another open heart and it is looking like it will be anywhere from 1- 2 years from now. So we were walking for my daughter and when the crew asked us why we were there they could not believe it! I mentioned her health history and their jaws practically dropped to the floor. It is very sad that people do not know about CHD’s more awareness needs to be raised.
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