Like many parents, I didn’t spend a lot of time thinking about congenital heart defects. That changed a little over 13 years ago. It was then, at my 20 week ultrasound, that it was discovered my unborn baby would be born with a severe heart defect called Hypoplastic Left Heart Syndrome, which essentially meant only half of his heart would be the normal size needed to function.
We learned a lot that day. We were told that heart defects were the most common birth defect, that I didn’t do anything to cause it, and it was likely a ”fluke.” We learned that his options were limited, his mortality rate was significantly increased and that we could have a lifetime of unknowns and medical care ahead of us. We were told his best chance at survival would be to have one of three open heart surgeries just days after birth.