There was this one time, it was just a little scary in the cafeteria, where I was just a little embarrassed because these boys were being a little mean about my heart thing, because it had happened. I didn’t really care about that, I mean it was still a little hard, but they told me that it was really weird to have SVT, and it was a little embarrassing. A bunch of people found out and they told the teachers, because it was in the cafeteria and that is a big place and a loud place, so eventually the teacher found out. A lot of my friends that were girls were really helpful during that situation. I feel like they was really nice.
– Emma, age 9, SVT
Leah: I tell my friends at school.
Mom: She’s had some health issues in kindergarten, first grade, and second grade, so they kind of have been on that journey with her, when she’s had some complications even while in school, so they’re very aware of and very supportive of her when she’s having a difficult time.
Leah: When I was young, like in kindergarten through second grade, it was hard because I was coughing up blood and casts and all that stuff, and I missed a lot of school, but now it’s pretty normal.
– Leah, age 10, and her mother, HLHS
Well, I’m pretty sure when every school year starts that my mom, she like writes out a note. You have to write out a note about it, and I’m pretty sure she wrote about my heart condition.
– Austin, age 10, TOF
Sierra: It was kind of scary going back to school after surgery because I didn’t know how everybody was going to treat me. It was just kind of weird going back to my normal routine. Everyone treated me as if I was a normal student. I would go to my guidance counselor, the way she would help me was to give me a stone that I could rub whenever I had anxiety and think about something that makes me happy.
Dad: Sierra had direct access to her guidance counselor whenever she got worked up or got those feelings. Her counselor’s interpretation was that Sierra had all these things in her head on how people were going to treat her and that didn’t happen, but they were still in her head. They talked about that. Having someone at school to just get away and relax was important for her.
– Sierra, age 13, and her father, Anomalous Aortic Valve
When I was younger, I had a lot of absences because I was constantly getting sick. Like we would go on the playground for recess, these kids are just like sprinting around, playing soccer like little kids do, and I wasn’t really able to do that as much. It was a little harder being younger, not being able to partake in regular activities that all the kids did because I absolutely wanted to. I’d try, I’d never be able to keep up with them though. So they let me play soccer or basketball or whatever we were doing, but I was just never on the same level energy-wise or athletic ability-wise for things like that.
It bothered me when I was younger. When I was really little, probably until third or fourth grade, that’s when I stopped really caring about it just because every once in a while you’d have some kid who’s just a jerk and he’d be like, “You can’t play you’re not good enough” and then all the other people start to say, “Well I’m not playing if Jake’s not playing.”
– Jake, age 21, HLHS