Mom: I think the challenge with SVT is tracking it, believing that you really know your kid, and speaking up around it, and in our case having a great primary care doc, who then sent us to Dr. Alexander, who believed me! He was like, “Here’s what you’re going to have to do if it happens again, try to…” That’s why when this EMT came, I said, “Can you please put her on this?”
But I think that was probably the big thing, having good primary care, tracking it when it happened, believing in it, being a good advocate, and just keeping persistent about it. Once we had a diagnosis it wasn’t scary anymore, it was just educating the babysitter and the camp and the adults.
Emma: It’s like, I can’t really remember many of the times when it happened, because when it happens you just literally feel like you’re in another world. If I was in a pool, I don’t think I would—maybe now I would—but if I was younger and I was in the ocean, I think I might have sank. Now if I had it in a pool I could probably get out, but it’s just scary because you feel like you’re fainting.
Mom: That ambulance visit was very scary because she was so out of it, and then the EMTs looked nervous, and I just was like, “Oh my God, what is going on?” But then Dr. Alexander was there when we arrived at the ER, and after that he said, “Congratulations, we have a diagnosis.” And he actually said to me, “Good job! As a parent, you’ve done a great job- you helped figure it out.” He had told me what to do, and we did it, and it all worked out, so good teamwork.
– Emma, age 9, and her mother, SVT
Well, I felt like I was missing out on some stuff. Like in gym, we have to do a test which is running, and I couldn’t do that. I can’t do one of the pull ups which I’d like to do, but I can’t. I want to play football and wrestling, but I can’t. I’m fine with it because I’ve gotten used to it over the years.
– Austin, age 10, TOF
There have definitely been times that I haven’t been allowed to do things because of my pacemaker. There was one time I was going to go white water rafting with some friends and the rafting place wouldn’t let me go, even though I had a form from my doctor. We actually ended up calling the doctor and they just wouldn’t let me go because it was a liability for them even though we said we would sign all these forms. That was really upsetting because that was the first time someone had just told me, “No, you can’t do this,” even when my doctors had said, “Yeah, you can.” So that was a wake-up call for me in a way.
When I was applying to college and I was being recruited for track, I was worried that with a Division I team that they would not want to recruit me anymore if they knew about my heart. It wasn’t an issue, it was fine, there are other college athletes who have medical problems as well, like asthma. It wasn’t a huge deal, but that was something that I had to consider.
And I guess on forms in general, I think almost any form you fill out asks about medical history, so it’s just always something that I have to question. Like, if it’s worth mentioning it or if I just don’t mention it at all. Because it really doesn’t affect my life that much, it’s probably never going to come up, but I don’t know if it’s something I should disclose sometimes.
In general, I think I have a greater appreciation for health and what that means, because I think a lot of people take health for granted until something goes wrong. But growing up with a heart condition, I value that more. And I guess I can maybe relate to other people more who also have health issues, because I have something myself, so if someone else has something they’re going through, it’s easier to relate to that.
I feel like when I was younger I was more mature in some ways because I had to deal with some of these surgeries. But I think that was also hard sometimes, because I had trouble relating to things that my friends were going through, or issues that they were facing when I felt like I had all these big things to deal with. Even now that’s sometimes hard because knowing I have to have this other surgery and then my friend will talk about some issue that she’s having that for me is not important at all, that can be hard.
– Emily, age 19, Pacemaker
Because of my ACL surgery, I had already been inactive for a few months, and then my heart surgery adding on to that, I was inactive from the start of my knee until a little bit after the surgery when my chest healed up. That set me back so far, like my stamina, and I was a little bit heavier, so that affected my athletic abilities too. The main challenges in getting back to sports were the waiting for recovery and the exercise restrictions. I got cleared for my knee and my heart a little bit after the season started, so I was restricted from soccer all the way until the season started. Then it was like my baseline was way lower than it was before.
Socially, the challenge was the lack of being able to play sports. Not so much like talking with friends and being a little bit messed up because of my knee because all my friends understood that I had had surgery.
– James, age 20, Anomalous Coronary Artery
Being younger was obviously tough just because between missing school and being sick at school, it kind of messes with your education a little bit. I missed a lot of basic stuff. It was tough to make friends if you’re in and out all the time. Luckily I made friends, but I can understand kids not being able to make friends just because they’re missing school and not able to play soccer with their friends or anything like that. The rewards are it kind of teaches you to be responsible earlier. It teaches you to grow up a little quicker than some people.
– Jake, age 21, HLHS