Since last summer, she just hasn’t gone to anyone’s house unless there was someone in the house that is CPR trained. I guess we lucked out that her best friends, one mom is a nurse and another mom works in a day care and all of the public school teachers, day care providers, are required to be CPR trained. We’ve also tried to host more than in the past, and that’s fine with us.

 – Catharine, mother of Willow, age 8, Long QT Syndrome


Academically, he is cognitively very intact and he’s a very smart kid, but the physical, he’s definitely behind physically and it’s hard for him to keep up with his friends now that they’re getting older and they’re more active. That’s been challenging for him. Socially, he has a couple good friends, but I think it’s hard for him on the playground. He would rather take a book and go sit on the side because he does get discouraged about his ability catching balls, running and keeping up with the kids. Do I think that sports and that type of thing would have been his interest if he didn’t have a congenital heart defect? No, he’s more of an artsy kid, but it does definitely make social situations difficult for him. We try to give him other options or give him things to bring to school that might attract the other kids away from those sports activities that he could bring outside with him.

 – Abigail, mother of Johnny, age 9, HLHS


He’s had some challenges—he’s small. These heart kids a lot of them they don’t have big appetites, borderline failure to thrive. He’s ten and just over 50 pounds. Last year we went through, at school, somebody who was teasing him because of his size. And that was hard. Hard on him and really frustrating as a parent because I know what this boy has been through and he’s gone through more in his short little life than most, even adults will. And for some little kid to be picking on him because he’s small—which seems like little things—but it’s just hard.

 – Grace, mother of Austin, age 10, TOF


Her friends are great. I don’t know how many of her friends know about it. I know some of them do because some of them have been with her for a number of years and they’re protective of her, but they don’t talk about it. All her friends just see her as being a normal kid. I think a lot of times they probably think of the fact that she has the AED as her mother being overprotective. But I’m fine with that, I will gladly wear that mantle.

In grade school there were a couple of times at gym on days that she had to sit out of gym—because there would be days that she just wasn’t able to do any of the activities, especially prior to her surgery—some of the kids would give her a hard time about being on the bench. That did bother her, but it never got to the point where it was like one child over and over or anything that I would consider to be bullying. It was just kids expressing the fact that she was doing something different than what they were doing.

I did have another conversation with the gym teacher to remind him to please give her projects on those days, and at that point we even talked about on those days she can even go to the library or she can just be out of the gym class altogether. They did start working a little bit harder at making sure she wasn’t just sitting on the bench.

 – Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker


Her friends kind of know what happened to her, kind of don’t. She keeps it separate, she says, “They’re my friends, they’re the girls I hang out with at the mall, the girls I’m in band with, they don’t need to know every point in my life.” So she keeps heart stuff separate from her other life.

Only one time did she get upset at school, and it was very early when she just went back to school. She went out into the playground and half the kids were lying on the floor, and the other half of the kids were doing compressions on their chests. They were play acting what to do, but to her, it was like, “Don’t do that, it’s not real, you’re just faking it. Why are you pretending to have a cardiac arrest on the floor? You didn’t have one, I did.” And it made her very angry. So I had to speak to the school about that so they said, “Don’t do that, don’t play act.” But it was just the children’s way of sorting it out for themselves. But that was the only time I’ve seen her get upset at school about it.

 – Jim, father of Chloe, age 13, CPVT


He’s got a couple of good friends and that’s it. He’s got a few friends he goes to the pub with because kids that don’t drink can go there too and they play pool and stuff. He did band in middle school and high school and I tried to encourage him to look into the percussion groups that are available at college. I get the sense that he doesn’t study or get lunch or dinner with kids who are now in his classes. Maybe that will change, but he’s always been like that. I don’t know how much of that is him not wanting to join in. He doesn’t say, “I don’t have any friends,” it’s like it doesn’t matter that he’s not having a meal with friends. Whereas I just see college as you work hard but you also have fun and you hang out. I just don’t see him doing that.

 – Louisa, mother of Gabriel, age 20, HLHS


Courtney: He’s a great athlete, always was in grammar school and high school. Baseball, football, soccer, tennis, swimming, sailing, everything, skiing. He could keep up with every one of his friends.

Richard: Only, it’s an example, if they’re running a 100 yard dash, he would be so far in front of everybody up to about the 80 yard point and then he would just run out of gas and they’d be able to run by him. Otherwise, a normal kid, fully engaged, from sixth grade to the twelfth grade. He was president of his class three of the six years. Nobody ever picked on him.

Courtney: He changed schools in middle school. By the end of his seventh grade, he wanted to make the change to the school his brothers went to, so his brothers said to us “Don’t put him in at the eighth grade, he’ll get eaten alive, it’s just so competitive, so physical, very sporty.” So we had him repeat the seventh grade. He went to his new school as a seventh grader. That was the best move we made for him academically. Him and a few other kids did that, and they became the leaders of that grade because they were a year older. He was pretty small in the seventh grade, and by the time he graduated, he’s 6’2 now. He’s a big kid. So that was a smart move, and it was his brothers who suggested we do that. They knew how tough it was.

 – Courtney and Richard, parents of David, age 23, TOF