I am the mother of a heart baby. And that's when you really start caring about congenital heart defects--when it's your child.
Before I became pregnant, I knew a bit about heart defects. A bit. I knew that my brother and his wife were pediatric cardiologists. I knew that some babies have heart problems. I knew that there were surgeons who did heart surgery on tiny baby hearts. I knew that there were success stories and heartbreaking stories--though now I can see that I didn't know what that actually meant.
I didn't know that heart defects are as common as they are in babies (1 out of every 100 born in the United States). I did not know that there are so many unknowns as to why heart defects happen. I did not know that so little money goes to researching congenital heart defects in comparison to other things.
I did not know that my baby would have a heart defect until all of a sudden he did. I did not know that Miles' heart defect--heterotaxy with a double outlet right ventricle defect (among other things) affecting approximately one in a million babies--would take his life.
It's congenital heart defect awareness week.