The Reality of HLHS

When we first received the news that baby-to-be had Hypoplastic Left Heart Syndrome, I was in an exam room with a screaming toddler. Tony had left to go to work and I was there to have my monthly check-up. A doctor (not my own) came in and gave me the news. I was taken off-guard and had no clue what to ask. So, like every person who has access to the internet, I went home and started to do my own research.

The information out there only gave us an idea of what HLHS entailed. The scientific papers & studies were, well, really scientific. The 'personal stories' were vague. We wanted details. It wasn't until we met with the pediatric cardiologist that we received realistic statistics. A lot of what I had read on the internet had given me false hope.

In most of the scientific papers that discussed the surgeries, they gave a survival rate of 75-80%. The cardiologist let us know that those statistics only take into account the babies that have the first surgery and are released from the hospital. Those numbers do not take into account the newborns who die before surgery and those who pass away before the second surgery. When you look at it that way, the survival rate is more like 50%. And then, 10% of those children do not survive the second surgery and then many do not make it to the 'final' surgery.

A child with HLHS is put through 3 open-heart surgeries in the first few years of their lives - at a minimum. The possibility of complications is high. Since this is considered such a new procedure, cardiologists aren't really sure how long the rewired two-chambered heart will last. Many of these children will need a heart transplant sometime in their teens; some might make it to their early twenties.

I think it's pretty amazing that doctors have figured out how to make a 2-chambered heart work well enough to keep a person alive. But, it's really important to take into consideration how having half of a heart will effect the rest of the body's organs.

I wanted to write about what we were told by the pediatric cardiologist (and there was lots more) in hopes that it would help other parents who have just found out that their baby-in-utero has HLHS. For a week, we thought Baby Bee had a better chance of survival and had no idea the kind of pain he would go through once he was born. We had to make the most difficult and painful decision once we had all of this new information.