Tag Archive | pediatrics intensive care

My Son’s Complex Congenital Heart Defect and Zamzee

Bobby_hiking

By Trish Whitehouse

My son Bobby is now 13 years old. He was born with a complex congenital heart defect, which means it wasn’t “just” a hole that would close on its own, or a murmur. It was a big deal. Our heart has 4 working chambers, 2 atria, a R and a L, which bring blood into the big pumping chambers underneath them. Those two bottom chambers, called ventricles, are responsible for pumping blood all over the entire body. The R ventricle pumps blood to the lungs to pick up oxygen, and the L ventricle, the stronger and bigger of the two, pumps that blood to the entire body for us to use so we can move and eat and sleep and function.

When Bobby’s heart was developing, for some unknown reason, his L ventricle didn’t form properly. That’s the bigger, most important one. Essentially, his left ventricle is useless. About 15 or 20 years ago, these babies used to be called “blue babies” and they were comforted while eventually over a few hours or a few days, they decompensated and died. We’re very lucky that Bobby was born at time where that was not our only option.

Bobby went through a series of palliative surgeries. They can’t cure or fix his heart, but they can make it work for as long as possible. I’m told by his cardiologist that these kids do very well and live healthy lives well into adulthood. I don’t ask for much more than that anymore, because that’s all I really want to hear. The only limitation he has is for him to “self limit”– meaning that he should pay attention to his own body to guide him for exercise.

Exercise is about the best thing kids with a single ventricle can do to keep their hearts healthy. But for a lot of parents, it’s the one thing they dread watching their kids do. The kids turn out to be what we nurses call “cardiac cripples,” meaning the kids aren’t allowed to exert themselves. As a result, these kids live in fear of doing ANYTHING.

Bobby_SwimmingWe are a family of intense competitive athletes, and it’s lucky for Bobby that he was born into this family. Although exercise is not easy for Bobby, we find ways to encourage him to do it. He huffs and puffs going up a flight of stairs and he bikes but he has to go slow. He swims on a team but he has to swim with kids half his age because he can’t keep up with the teenager. Because of all the months of critical care in the hospital following complications from the surgeries, he’s not that coordinated. He plays soccer in school, but he basically watches the ball go by and then he’ll trot after it for a little bit, but he lets the “real athletes” kick it around the field. It’s kind of sad to watch. Who am I kidding, it’s horrible to watch. Every mother wants their kid to make that winning shot, just once, or to at least give the opponent a run for their money. Literally. Continue reading