Emma: My siblings know about it and they are very supportive and nice about it.
Mom: You thought they were supportive and nice? I did too, but you don’t always say that about them…
Emma: It’s like Charlotte’s nut allergy. Me and Kate are never mean to her about that because it’s something serious and it would be really mean.
Mom: They also knew what to do if you had an episode of SVT, right? If it happened, they could tell somebody.
Emma: Yeah. One time when my friends were over, my sisters told them about my SVT and hanging me upside down and because they my friends were gymnasts, they caught my cartwheel when I needed to stop the SVT.
Mom: I think they all thought that was very exciting
– Emma, age 9, SVT, and her mother
Leah: My brother knows about my heart condition. When we would go to the hospital, he would come to visit.
Mom: We’d drive by the local hospital and he’d say, “Oh, there’s Leah’s hospital!” He was young when she went through a lot of her episodes, and I think the hard thing for him was that in a two and a half year period we went to Boston five times. So it was hard for him being away from us even though he was being left with grandparents. But again, it’s been so long that it’s easy to put those difficult days behind you whenever you’re having good times, because if you dwell in the past it makes life a lot harder.
– Leah, age 10, and her parents, HLHS
My sister visited me in the hospital, but not during doctors’ appointments. She’s funny. She taught me how to blow up one of those hand gloves and make a turkey out of it.
– Austin, age 10, TOF
Sierra: I have two sisters. One is turning 10 and one is turning 12. I think it was me who told them about the surgery. I just told them I needed heart surgery. They didn’t really care because they were really young too.
Dad: They just wanted to know who was going to come stay with them. My wife’s sister stayed with them while we were in Boston. We were very fortunate that she was able to fly out both times. She lived across the country so not an easy trip, but she had older kids and was extremely generous to come and take care of our kids when we were in Boston.
– Sierra, age 13, and her father, Anomalous Aortic Valve
My parents and I don’t really talk about it that much. If I have a question about something they’re always willing to answer it, but I don’t think that they go out of their way to talk about it with me. It also isn’t something that affects my daily life, so it’s not really on everyone’s minds. I definitely think my parents were more protective of me when I was younger. I have a younger sister and I feel like part of it is just being the older child, but I think they were much more protective of me than they are of my sister Maybe that’s also just a birth order thing. I feel like my sister doesn’t actually know that much about it. She doesn’t really ask about it. Last time I had an appointment it ran kind of late and she was annoyed that we couldn’t pick her up right away and I was like, “Sorry, this was kind of important.” But she didn’t really get it. She’s healthy so we don’t really talk about it.
When I was younger, I made it clear to my parents that I was nervous about my procedure. I think they were almost afraid to talk to me about it in some ways because they didn’t know what to say. I know that my dad has always had an easier time talking about it, because he has kind of a humorous side to it. Like, I wrote my college application about my heart condition and he would joke, “I knew that pacemaker was good for something!” He can joke about it, but I think that my mom sometimes has a harder time dealing talking to me about it because she can’t relate, so it’s hard for her to find the common ground.
When I had to have one surgery, they didn’t tell me about it until really close to the surgery. I think they did to protect me, but I was really frustrated because I wanted to know. I didn’t think it was fair that they told me three days before I was going to potentially have this surgery. It ended up being pushed back—that was when I had the location of the pacemaker moved. I was in seventh grade. I had qualified for this big track meet that I really wanted to run in, and I wasn’t going to be able to do it anymore, so it was a big deal to me. Then the doctors ended up realizing that we could do the procedure in the summer, so I ended up having to miss a family vacation, but I was able to do the track meet and the things I wanted to do.
It was hard when they moved the pacemaker because there was the option to either take the old pacemaker out, or just leave it as a back-up. I obviously didn’t want it to still be there, but my parents really wanted to still have it, just in case. So that was a big thing, because as I was a minor, they could make the decision, but I really didn’t want that. It ended up being solved because the doctors ended up calling Medtronic, which is the company that makes my pacemaker, and Medtronic said that it could potentially cause an issue if they left it there, so I was like, “Ha-ha, I’m right!”
I felt so proud of myself like, “I was right all along!” But that was something that was really hard for me to understand, that I couldn’t make that decision for myself. Now I understand that my parents just wanted what they thought was best, but it was difficult to understand at the time. I remember even when I was younger, particularly that surgery, there were all these forms, like liability forms and I didn’t sign a single form. My parents signed all of them. I didn’t read any of it. That was kind of weird for me because I was obviously old enough to understand what was going on. I guess I kind of wished I had more control over my own body.
– Emily, age 19, Pacemaker
When I was really young, I feel like my parents were pretty protective. Obviously because you’re protective of a little kid no matter what, but then there were just a lot more questions when I was younger about getting hurt or being sick. They weren’t overly protective, but they were pretty protective at the time.
Obviously sports are big when you grow up, and I wasn’t allowed to play any sports really. But I really wanted to play baseball. My mom didn’t want me to and my dad was like, “What could possibly happen with baseball?” So they let me play baseball which was great. But other than that, there was some restrictions on other sports or other activities they didn’t want me to do.
Going into high school, you try to do a lot of different things that you didn’t try to do in middle school, like with alcohol and stuff like that. Before freshman year and especially during freshman year, I’d get the lectures, “You’re not like your average, everyday high schooler, don’t be trying all that stuff, we don’t really know what could happen, you’d be taking a chance,” all that stuff was always thrown around in high school. That’s advice I should have listened to. Then in college, they were surprisingly like, “Alright, you’re on your own now. You’re in college, it’s time for you to be an adult, get a job.” They don’t really restrict me from anything. Freshman year I said, “I want to go for a trip to Louisiana,” and they said, “Okay.” That was weird because my mom wouldn’t let me go anywhere in high school. I feel like the trust level went up when I went to college. They said, “You can take care of yourself.”
There was definitely a difference in how my brother and I were expected to act in high school. He was your typical play every sport student-athlete, go-out-on-the-weekends kind of kid. He did a lot of things that I probably would not have gotten away with in high school. But he was huge for me when I was younger, he was always trying to get me to go outside and play anything. He was always trying to keep me active, which was huge. And then in high school, he was there for one year when I was in high school, he helped a lot with transitioning to a new high school, and then he went off to college where he got the same treatment I did, “You’re on your own, it’s time to be an adult, get a job,” which I thought was great because in high school it was a little different for me and him.
My brother and I have been really close as far back as I can remember. He’ll go out of his way to stop by my school. Like he’ll drive 40 minutes out of his way from work to home to come get dinner, come play nine holes, stuff like that. And we talk non-stop, so people think we’re weirdly close. Like my parents think we have a language. And he always ask, “Hey, how was your appointment, what did they say?” stuff like that. If I’m not feeling well, he’ll hear about it whether it’s from me or my parents.
Family is huge. Not only your direct family like your parents and your siblings, but everyone. Everyone was always really supportive and still is really supportive in my life. Hopefully everyone’s really supportive of not only the patient, but also of the parents and the siblings too. It’s obviously tough for everybody.
– Jake, age 21, HLHS