Helping my child cope with an ICD/Pacemaker

She’s never felt a shock. She’s come close. That’s one of the great things, it’s monitored. She has a monitor in her bedroom, so if there’s some activity that Dr. Alexander doesn’t like, he calls us in. Immediately I’ll get a phone call, “You need to come in. Nothing major, but we need to take a look at something.” And then he’ll either increase her medication, or he just recently changed her medication and for that she had an overnight stay in the hospital.

His calls are less now. In the earlier days it used to be a little bit more because as he explains to us, “we’re dealing with something that’s individual to each patient, it’s individual to each child.” The severity of it. He’d see a little bit too many arrhythmias that we’d need to address, so we’ll bring her in and we’ll increase the number of beats before a shock.

She’ll get a bit nervous about a shock—she’s like, “What does it feel like?” I tell her, “From what I’ve read, it feels like you get a really hard kick in the back, it’s quick, and sometimes you may pass out beforehand.” They said that her defibrillator’s got a year of battery life left so it will need replacing, the battery will need replacing. It’s something that she knows. She doesn’t mind, because she loves staying in hospitals. She likes the environment of a hospital. She likes to see the other kids.

 – Jim, father of Chloe, age 13, CPVT


I haven’t experienced a shock, and neither has Rebecca. Actually, since my defibrillator was put in about ten years ago, it has never recorded anything scary, so I feel really very comfortable with my own health. My heart is kind of enlarged to the point where it probably can’t enlarge anymore and I’m able to function really well with it, and I exercise. But hers, she doesn’t exercise, she walks. She is so young for this disease, it usually doesn’t hit until you’re in your twenties or thirties. I think it’s because she was so athletic, but maybe that’s what brought it out. So she doesn’t exercise, and her defibrillator hasn’t recorded anything scary either, and she’s had it over two years. I’ve had mine replaced once. It’s an eight year battery life. Well it was eight when they put my last one it, maybe it’s longer now.

 – Amy, mother of Rebecca, age 19, ARVD