Well, I would tell others not to worry in the hospital because they’ll probably be busy. And at night, there are doctors working. I woke up because there was a doctor and I didn’t know they were there. Don’t be nervous because of the needles. They put medicine on you to make it not hurt. And for a pacemaker, well it’s going to feel pretty normal once you get used to it.
– Alexandra, age 8, Pacemaker
Advice I gave myself is that it’s not life-threatening and eventually you’ll get the procedure and it will go away. And eventually, you might not have it any more. That’s the advice I would give—just to not worry about what will happen in the future, just live in the present, it’s not something you should take time out of your day to worry about. Anytime it happens just make sure you’re telling someone. Always just tell yourself that everything is going to be alright.
Also, I love to ask questions, because once I know the answer, even if the answer is bad, I just like knowing the answer. I like surprises, like for presents and stuff, but if I was having like a baby boy, I would want to know it was a boy. So I think asking questions is a big part of helping how you understand what’s happening. I think the doctors can explain a lot more about how this really affects your heart and how it’s not life-risking and how it’s just—you’re only doing the procedure because over time it might get a little more dangerous, you’re not doing it because it’s really, really bad for your body. You’re just doing it because once you get older, like if I was driving and I got it, I could have like a car crash, and that’s not funny.
What always helped me was to know that my coaches were very familiar with SVT and that I remember going to this camp and my coach had a heart condition and she always helped me with that—it would always make me feel comfortable. So just tell everyone, just to make sure and always have someone looking at you when you’re swimming if you have SVT, just in case, especially if you’re in the deep part of the water.
– Emma, age 9, SVT
Mom: What would you tell them Leah? How do you cope? What gets you through the scary hard days?
Leah: Just have faith that you will make it, and just relax and be calm.
Mom: And I would say for her father and I, it’s the same—it’s faith. If it weren’t for that—I had a friend the other day who told me I was so brave and I said, “It’s not bravery, it’s faith.” If it wouldn’t be for our faith, I would have crumbled a long, long time ago.
Leah: Everything will be okay.
Mom: Whenever Leah was little, so many people praying for her, praying for a miracle—I never found myself praying for that, I always found myself praying that she wouldn’t suffer. I know that in my heart, that if God chose to take her from me before I was ready, He was bringing her to a better place, so I never wanted to ask her to remain here and suffer. My prayer was always that she would just not be in pain.
– Leah, age 10, and her mother, HLHS
I think generally for people with heart conditions, I would say don’t let it get in the way of doing what you want, within reason obviously. I think people hear that a lot, but it’s also important to remember to not let it impact you, but also don’t be ashamed of it. It should be something that you are proud of because it’s something that you overcame. And not being afraid to be apprehensive about things too, because I think that’s one of the things when I was younger, I felt sometimes like I shouldn’t be nervous about some of the surgeries I was having, but I think realizing that it’s okay to be afraid of some of those things, and you should be able to talk about it. Also realizing that you don’t have to disclose all of your medical information to everyone, and that if someone asks, it’s up to you what you tell them.
A big thing is not letting people—besides doctors and nurses and people who know what they’re talking about—not letting random people tell you what you can and cannot do, trusting that you know your body the best, you know what’s best for yourself. Someone can make a suggestion, but ultimately it is up to you. Knowledge is probably the best way to overcome that.
– Emily, age 19, Pacemaker
Just pay attention to what they’re saying about the process so you’re in the know about what’s going on and basically do what they say and then some.
– James, age 20, Anomalous Coronary Artery
I’ve talked to some families before and the most common question is probably, “How did I stay so positive?” Because a lot of kids are not very positive about their heart condition. I tell them, “If you want your kid to be as happy as I was when I was younger and as I am now, don’t hold them back from much. Like if they want to play baseball, let them play baseball. I wasn’t good and I struggled, but I know my parents let me do it because they knew it would make me happy. Let them try different things. If they want to do karate, let them try karate. Obviously don’t try dangerous things like contact sports, but don’t hold them back from much.”
I would think that that would be most of it just because it keeps me feeling good, like a normal average person. But I didn’t think I was going to get to go to college for a while and I was kind of bummed out about that, just because of like, “Ah, mom and dad will never let me go away.” But we compromised and the deal was an hour away was the furthest I could go and even that, that’s still a lot of schools. And my parents aren’t here all the time. I figured they were going to pop in every weekend or at least I figured my mother would. I mean they’re great about it. Just let your kids do it, let them try different things.
One thing that bothers me is when people just dwell on the whole heart defect. Like that just sounds like a depressing life. I can’t understand how people do that, that’s all they talk about, all they think about. But something that resonates with me is like—I’m pretty lucky to be where I am today.
– Jake, age 21, HLHS