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.

So because of all the above, Bobby can put on weight easily if we’re not careful. I don’t want to police his food, so for now, we just set an example by eating moderate portions and spacing meals. But I also know that exercise is key to a healthy body, a healthy mind, and certainly a long-lasting heart. But how do you do that with a kid who really doesn’t like to move because it’s so hard for him?

This is where the Zamzee comes in. We were looking for some kind of monitoring system where I could set up a reward for a certain amount of time that he moves. All the pedometers or exercise monitors I found were WAY too complicated—Bobby doesn’t care about his pace, or the altitude of his climb (what climb?), or getting on support boards. Bobby_BikingIn fact, with his developmental issues, an online community board is a disaster waiting to happen for a kid like him. I found the Zamzee by mistake, really, I had never heard of it before, but when I saw how it worked, the research that’s been done and the price, there’s no way I could go wrong.

From the minute he got it, he’s been more interested in moving. The challenges are a little too much for him right now (we’re still getting used to this), but we can follow exactly when he moved in school, how many points he earned during soccer, what happens when he takes the dogs for a walk, and how other kids are doing on any given day. He’s finally not competing against other “typical” 13 year old boys who can literally run circles around him. He’s competing with himself. We devised a reward system that works on pointz, and as long as the site is keeping track of his pointz, he knows how many he needs for a certain item. It’s also teaching him how to work on long-term goals because the item he wants is worth 200,000 pointz, and that’s going to take him about a year. It’s even teaching him how to count to high numbers and what it means to earn “hundreds of thousands” of something.

So we basically love your product. I can see Bobby’s endurance has improved drastically since he’s begun walking so much, and it’s absolutely the best thing a parent can hear when their child who normally huffs and puffs doesn’t really do so anymore. I don’t know if his weight has changed and I really don’t care—this is much more than just weight for him. The best part is when HE comes to ME now and asks me if we can take the dogs for a walk. He used to argue and come up with all kinds of excuses when I suggested it to him. He’s also been on his iPad a lot less, which is always a source of conflict for the two of us. On one hand it’s easy for him—one of the few things that doesn’t make him work hard. On the other hand, the less he moves, the harder it becomes to get off that couch. As the wise saying goes, use it or lose it. Zamzee is helping Bobby learn how to be active, and I couldn’t ask for more.

Bobby_Zamzee

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2 thoughts on “My Son’s Complex Congenital Heart Defect and Zamzee

  1. I hadn’t even thought about how a zamzee would be great for a kid for whom physical activity is harder than it is for the average kid. That’s really amazing and I hope he gets that soccer goal some day!

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