Dad: We didn’t really sensor her experience. Sierra can tell you that the worst part is not the surgery but they have a tube that sticks in your chest that drains fluid around your heart. There is a point where they need to remove that tube and they literally just pull it with both hands and it flies out! Was it painful?

Sierra: Yes, a lot.

Dad: Yeah. Some people may not want to know about it because then they might worry about it. But then again, it is probably good to be aware of it. There were a handful of times when I was adamant with the doctors and the nurses in the ICU about getting her medication. I got into “Dad mode”—one of those necessary evils. But you gotta do it. Maybe the kids don’t need to know about it before it happens.

Sierra: No, I didn’t know it would happen the first time. I wasn’t scared the second time because dad said that they would put me to sleep.

 – Sierra, age 13, and her father, Anomalous Aortic Valve


I had ACL reconstruction previously, so I kind of knew what was going happen for surgery. They’re going to put me out and I’m going to wake up and endure whatever, so going in I wasn’t really scared, but like I said, I had ACL reconstruction a few months before, so I was a little bit prepared. Before of my ACL reconstruction, I was a little scared, but people around you, they comfort you, so it’s not bad. When you get out of surgery, people are there to take care of you, and all you need to do is really do what they say.

There weren’t any complications, it was just recovering from the surgery. Recovering was a little challenging, because you can’t really do anything. What made it difficult was the time crunch that I had, because I had the surgery in the summer, and I had basically from the start of summer to the end of summer to recover if I wanted to be back for my fall sports. Just being restricted was challenging because I had to keep my heart rate at a certain level, it was 140 beats per minute, so I had to deal with that while on medications.

Other than the medications and the heart rate restriction, there was just basically getting my lungs back to normal, which wasn’t necessarily hard, because you use your lungs all the time. My day to day life was, since it was during the summer, it was repetitive, it was the same thing, because I was just trying to get back in to shape to be active again. But my friends, they took into account that I was recovering from a major surgery, they took me through it, they spent time with me and kept me company. Originally, I couldn’t work because of my knee. And then my chest, I couldn’t lift anything, so I couldn’t work that summer either.

 – James, age 20, Anomalous Coronary Artery


I’ve never had anything- knock on wood- too serious since junior year or senior year of high school. One time I got to work- I was working at a hardware store when this happened- we had like six feet of snow and I was shoveling and I had a heart palpitation. I just tried to calm down, I walked into the store and I told my boss, I was like “Hey, I’m going to need a minute” and he was like “Alright, what’s up?” and I told him, “I think I just had a heart palpitation or something” and then I texted my mom, which obviously I should do but at the same time, I was kind of mad I did because she called an ambulance and I had to go to an ER just to get checked out. But everything was fine. So for a while my doctor was saying like, stop shoveling, don’t shovel, but I mean I didn’t really stop, I didn’t shovel as fast. That day I was really pushing myself, but I don’t really shovel that much anymore. Other than that, I really haven’t had anything big come up.

 – Jake, age 21, HLHS