- Parents must make tough choices when finding out their child has a heart defect
- Not all kids' heart surgeons are created equal
- Understand your child's heart defect before seeking a surgeon
Every year, thousands of parents get a shock when they go in for a routine ultrasound during pregnancy: Their child has a severe congenital heart defect.
That means some tough choices. Some defects are so severe that parents decide to terminate the pregnancy. If they choose to keep the baby, they have to pick where to have surgery or surgeries (many of these babies need several procedures over the course of many years).
The first thing for parents to know is that operating on an organ the size of a newborn's fist with vessels as small as a piece of spaghetti requires great skill and experience. This isn't the same thing as getting your child's tonsils out.
Statistics show not all pediatric heart surgeons are created equal. Experts advise against automatically going to the one suggested by your obstetrician. The obstetrician might be sending you to someone because he or she is a friend or because his colleagues send patients there.
Instead, they suggest looking closely at different programs. Here are some tips:
1. Get educated
You can't ask good questions if you don't understand your child's heart defect, many of which are quite complicated. There are lots of good resources out there, including the Centers for Disease Control and Prevention and the National Library of Medicine.
Kristen Spyker, whose 3-year-old son Logan has a congenital heart defect, also recommends purchasing a copy of "The Illustrated Field Guide to Congenital Heart Disease and Repair," which she says gives great explanations for heart defects and surgeries. She found that many nurses had it on hand at her son's hospital.
2. Check hospital rankings