I think that SVT definitely was a part of my life, but if I was describing myself, I don’t think that SVT would be in there somewhere.

 – Emma, age 9, SVT


Alexandra: I feel different because I know all about it, but my friends don’t. Like a couple of weeks ago, these boys were tackling girls in my class and my mom said that they couldn’t tackle me, so my mom had to tell the teachers. So it was kind of a big difference.

Mom: Boys shouldn’t just be tackling girls to the ground anyway, but yes. What about versus your twin? How do you feel different from Susie?

Alexandra: Well we’re different in other ways aside from the pacemaker, but I don’t really know.

Mom: Is it sometimes hard that you have to come in every year for your appointment and your sisters don’t have to?

Alexandra: Yeah, sometimes I feel like they’re luckier than me to not get the needles. They don’t have to do all the work and they normally don’t come in to the doctors. I’m the only one who really comes here a lot.

 – Alexandra, age 8, and her mother, Pacemaker


I know I shouldn’t be down that sometimes I can’t do some stuff. It’s not because I can’t do it, it’s because I have a heart condition.

 – Austin, age 10, TOF


Mom: We became very close to Father Fay and Sister Carlotto the first six months in Boston because we were there quite a bit and we would go to weekly mass and either Sister Carlotto or Father Fay would come and bring us communion, so we found great comfort in that service being provided at the hospital. At first we were trying to find a church nearby, and then I don’t remember who told us or how we found out there are services Sunday morning at the hospital. So we participated, we both read during mass before, and when Leah could come out of the room, when she was well enough to leave the room, she came to mass with us.

Leah: I remember we went to church from the lobby

Mom: I used to tell people that Leah was going to be a nun when she grew up, she was going to be the “Sister Carlotta” of our Children’s hospital down here, and one day she told me she was going to be “nothing” when she grew up, and I said, “Well Leah, you can aim a little bit higher than that!” and she said “Well, you said I was going to be None!” But Leah what do you want to be when you grow up?

Leah: A nun.

Mom: She goes to a Catholic school, and over the past couple of years—it has not been me pushing her, by no means, but she said she wants to be a nun, she wants to be a teacher and a nun. She’s got an incredible sense of faith. I was certainly not that child at ten years old that she is today with her faith and she’ll go in her room and write songs and she comes out and they’re always about God or Jesus, and very faith based poems. She’s an altar server at mass and she always wants to get to mass early so that she can serve. So there’s just something inside of her, her faith is pretty incredible for a ten year old.

 – Leah, age 10, and her mother, HLHS


I think it was hard to be different at such a young age. I feel like as you get older, you realize that more people have things that they’re dealing with too, but when you’re younger it feels like so many people are just kind of perfect, there’s nothing really wrong with them. Like most four year olds, there’s not really that many health issues they have, so it was definitely harder when I was younger. But I think that it also motivated me to want to prove that it didn’t define who I was, and I think that track was a big part of that for me. Since fourth grade, I did club track, and then I didn’t actually start- I did a couple of meets when I was really little, but middle school is when I really started running competitively.

I don’t think my heart condition is super important, unless it has to be. Like unless something were to happen.  It’s something that some people have to be aware of—obviously my coaches know about it—so it’s important in that sense of making sure that if something did happen, they would know what to do. But I don’t think it’s really that important for everyday life.

Maybe it affects me, but in a positive sense because it motivates me to work harder and want to prove that it doesn’t—this is going to sound really cliché—but that it motivates me to want to prove that it doesn’t define who I am.

 – Emily, age 19, Pacemaker


My parents were there when I got told that I couldn’t play soccer again, and they were heartbroken too. And I think seeing me crying, it affected them. For example, on the ride back, it was a quiet ride, nobody really talked. And then they were worried about my mental health, but I was fine. It was weird knowing that I could have died. For my brother, my parents said that I was going to be fine, and when he heard that, he was like, “oh, he’s going to be fine.” But he would check up on me, and see how I was doing.

My mom, she’s a nurse practitioner and she was in the military, so she’s very knowledgeable about medical stuff. If I had questions I could ask her, I had an easy reference. But not everybody can have that.

If I hadn’t found out about the surgery, I probably would have had to change my plans of studying with culinary. I would’ve had to rethink my career about being a culinary major because of how you’re always up on your feet and how your heart rate goes, and I was told that I can’t get my heart rate up. This was before we knew about the surgery.

The stuff with my heart hasn’t changed my goals or how I view myself. I guess it has affected me a little bit because of what other people have said about me, about going through the surgery and recovering, and basically setting a recovery record. Instead of six months, it’s three months now. So knowing that I did that, when people say that I was tough, I kind of take that to heart, because cutting the time in half basically is, to me, like it doesn’t really seem that big because that’s what I went through. But for other people, like a boy I talked to, he was able to go back to sports in three months because of how quickly I got back to my baseline.

 – James, age 20, Anomalous Coronary Artery


Like my mother says, I’m so far in the land of denial because I hardly even think about it. There are people that dwell on it, while I just think of myself as a regular 21 year old college student. The only person that’s said, “you’re different” to me really is a doctor. A doctor will say like, “Don’t forget, you’re not the average 21 year old,” but I don’t really pay much attention to that, I just kind of move on.

For spring break I went to Texas and spoke to a Heart organization there about how I am like your average 21 year old. The whole presentation I gave was pretty much how I’m not really dwelling on it. It was eye opening to see how some people, their lives revolve around their heart condition. Like, some people will be doing as well as I am, but their heart condition is all they talk about or think about. I just can’t see how someone could do that, but everyone’s different.

 – Jake, age 21, HLHS