Reid was diagnosed with hypertrophic cardiomyopathy shortly after he was born, and had a defibrillator implanted at age 12. “It’s like an insurance policy,” says his mom, Maria. “If something should happen, it’s there to save him.” But one day everything changed – and he and his parents turned to the experts: pediatric cardiologist William Bonney, MD, and his colleagues at CHOP's Cardiac Center.
Hypertrophic Cardiomyopathy: Reid's Story
Maria: After Reid was born they came in and said that, “Sometimes C-section babies had problems breathing.” And they came back to me and said that they thought that Reid was in heart failure. It was living like the nightmare of just what’s going to happen? Is he going to make it? And it’s truly terrifying to think, you know, life is so precious and I just never thought that we’d have this worry.
He spent about 10 days in the NICU and that’s when we found out that he had hypertrophic cardiomyopathy.
William Bonney, MD: How are you?
John: Good to see you.
William Bonney, MD: You too.
Maria: Hello, how are you?
William Bonney, MD: Hypertrophic cardiomyopathy, Reid’s heart condition, is a disease where the muscle of the heart can become so enlarged that it starts to obstruct blood flow out of the heart. And the way that the electrical signals travel through the heart can become disordered and that can be a set-up for arrhythmias.
Maria: It kind of changes the way you think of everything. And, you know, just changed our lives forever.
We would have to give him his medication, then it was the tiny little dropper, and it was such a stressful time. You know, if he spits up then you can’t re-dose, and you know, if he does it again then you have to go back to the hospital.
John: I’ve flown combat missions, I’ve been in places I never wanted to be, but giving Reid his medicine was the most stressful thing I’ve ever done.
Maria: As he was getting older and it was more adolescence and things started to change. That’s when there were some issues. The cardiologist that we were seeing at the time started talking about a defibrillator.
William Bonney, MD: In Reid’s case it was that his heart was just becoming abnormally thick. And had reached sort of a critical threshold. A defibrillator is similar to a pacemaker in that it’s a device that’s implanted in the chest and it consists of two components. The first is the generator itself, and then the other component is what’s called the lead. And that’s the wire that extends from the device, and attaches to the inside of the heart. And the device serves two functions: it can pace the heart if it gets too slow, and it also monitors the heartbeat for rhythms that are dangerously fast.
Maria: He wasn’t really allowed to do soccer or anything until he got the defibrillator. It gets more difficult as you become a teenager, and you want to be like everyone else and do what everyone else is doing, to face those restrictions.
Reid: I’m a goalie. There’s like a lot of restrictions with running and things like that. So when my team will condition, I’ll have to like sit out. And it really doesn’t bother me, but, I mean, I wish I could do it, but being a goalie is satisfying.
Maria: Reid rides a bike, goes to the gym, likes to exercise as much as he can.
William Bonney, MD: In the event that there’s a life-threatening cardiac arrhythmia, the defibrillator will deliver a shock similar to what you would get externally with paddles.
Colin: The night his pacemaker went off we were just laughing, and it just went off. And we didn’t know what it was at first. We thought it was like a cellphone. And we kind of just looked at each other and he looked at his chest, and everything got like serious. It was scary.
Reid: After I came, like, back to my senses and like realized what was happening, I was pretty scared.
William Bonney, MD: Reid had a fracture of his defibrillator lead. The lead needed to be removed and a new lead needed to be implanted. The thing that happens with young people is that the leads that live inside their veins can develop a scar, just like you have scar on the outside of your body, you have scar around that lead. And so pulling it out isn’t just as simple as pulling a key out of a door. It has to be lasered down and removed in a very controlled setting. So again it is something that is not without risk.
John: It was a very difficult procedure. I believe it was eight or nine hours,
William Bonney, MD: Yes.
John: somewhere thereabouts.
Maria: At one point I started to cry, and he came out and reassured, you know, “Look we have the best people in there, and this is what we’re doing.”
William Bonney, MD: Fortunately Reid’s procedure went well and we were able to implant a new lead and a new device.
Maria: Reid is very special. We’re looking at this as a marathon, this is not a sprint. This is the long term.
John: Every night when Reid goes to bed, even now, I kiss him three times and say, “I love you Reid.” And I’ve done that since the day he was born, every night.
Reid: I look at life a lot more precious I guess. I don’t know, I live, I do more exciting things. I don’t really have any worries because of that.
Every heart has a story, and this is my story.
Topics Covered: Cardiomyopathy