I’m 8 years old and I’m in third grade. I have a pacemaker and I was born with complete heart block. When I was born I got a pacemaker and I don’t really remember anything about that. I just say it’s a thing in your body and it helps your heart.
– Alexandra, age 8, Pacemaker
I am in third grade and I like to play soccer for fun and I like to climb trees for fun…I remember I was at gymnastics practice and we were making pudding except I was sitting out. My teacher called my mom and she said that I was acting different – usually I was super hyper and I wanted to do everything, and so my teacher called my mom and she took me to the ER in an ambulance. I remember having the face mask on my face and my mom being there with me and I was just lying on the bed. That’s all I remember in the ambulance.
– Emma, age 9, SVT
I’m in fifth grade, my favorite subject is gym, and I like to golf for fun and ski for fun. Outside of school I do junior PGA golf and baseball. I was born with Tetralogy of Fallot. I learned about it when I was like two or three. I was too young to really realize and then I started knowing more about it as I got older. I figured it out.
– Austin, age 10, TOF
Mom: She knows about her diagnosis – she’s had a lot of ups and downs so she’s kind of learning things as she goes, especially during the more difficult days, so I don’t know if I could pinpoint an exact time of when she learned about it. She probably—one of her earliest memories might be—back when you were in kindergarten you were having all those problems—she doesn’t really remember the surgeries or anything like that, because it was when she was so young.
Leah: I do, and I just say I have half a heart. That’s all I say.
– Leah, age 10, and her mother, HLHS
Sierra: I’m going into 8th grade. My favorite subject is science, and in the summer I like to go boating and in the winter I like to go skiing. I like kayaking too.
Dad: She was an infant, it was a heart murmur is what they said. They thought it was aortic stenosis. From there they monitored her and at first it was mild and it progressively got worse as she got older. It was something she didn’t know about until she was maybe 8, 9 or 10….Right around when she was 10, the condition had gotten worse so the amount of leakage through her valve had grown and also the size of her left ventricle had grown from trying to work so hard. So those two factors were causing her heart to be extremely stressed. They monitored that on a mild-moderate-severe scale using echocardiograms and it got to the medium to severe. Our current doctor wanted to go a little heavier on some medications, which we weren’t really sure we liked. At that point we called Dr. Lang out of the blue, literally. I looked it up on the web and because it sounded concerning, we got an appointment within a couple weeks. At that point that, our local doctor said we needed surgery because he was alarmed by the size of the ventricle and the leakage in the valve. That was sort of a shock to us and we had to process that in his office, in front of Sierra, being totally blind sighted. So at that point things moved fairly quickly. I think we scheduled the surgery three months from that initial appointment of coming to Boston. So that went fast and that is when Sierra started to understand what was going on. We tried to talk in terms that maybe she could understand.
Sierra: I was really scared. I didn’t know I had this so I was very surprised.
Dad: She knew she had something with her heart but at that age you don’t really care too much until surgery came up.
– Sierra, age 13, and her father, Anomalous Aortic Valve
I’m a sophomore in college, I’m on the DI track team there. I’m a sprinter, I’ve done track since the fourth grade. I’m also a wilderness leader at school which means I lead pre-orientation backpacking trips at the beginning of the year for freshmen. I’m also in a sorority. I’m a psych and creative writing double major.
I was born with VSD and coarctation of the aorta, and then I developed complete heart block through some of the surgeries, so I have a pacemaker now. I’ve had a pacemaker since I was four, and I’ve had the pacemaker replaced twice, I’m on my third pacemaker. I think it was probably when I got the pacemaker that I really noticed that there was something different just because I think that’s when I had to start taking more precautions, and there were more things I couldn’t do. I couldn’t go through the metal detectors at airports, which is just a basic thing. It was something that was different. And when I was on the playground, there were certain things that I couldn’t play on, so I think that was when I started to notice it the most, just because before all the surgeries I had had were when I was a baby, so I don’t really remember much of them, so I think that that was probably when I started to notice it the most.
– Emily, age 19, Pacemaker
I’m in college majoring in culinary arts. I like to play soccer and I like to cook food. During my junior year of high school after I had ACL reconstruction, I started having high readings of blood pressure so my doctor wanted to get it checked out. We went to see a cardiologist and on the echo, he found my defect, and harshly told me that I would never be able to play sports again and I would be on a beta blocker medication for the rest of my life. Hearing that was…it was kind of heart breaking…and I kind of broke down because that’s my life.
We got referred to another cardiologist who told us about Boston and we came here, and that’s it. It was…it was May, it was in the beginning of May when we made the decision to have surgery to fix my defect and then we got a surgery date a little while after. I wanted to get the surgery done as soon as possible so I could get back to playing soccer, because that was my main goal when I got the ACL reconstruction. And so we were put on a waiting list, and a little while later we got a call that a spot opened up in June. I had my surgery at Boston Children’s. Dr. Emani performed the surgery, and it went well, and then three months later, I got to play soccer my senior year.
I didn’t know about my defect until then. We didn’t know about it. It started as a routine check and then during the echo, my original doctor just found it. He said that it’s usually found on autopsy and I got lucky. He said any time that I was exerting myself throughout my life, I could have died, because what he said, is that there are the two main arteries, I’m not really that knowledgeable in the technical terms, and I had one artery that went between them and it wasn’t supposed to go between them, and when I exerted myself, the two bigger arteries, they would expand, and they would expand and they would start cutting off that little artery that went between them, and he said if that artery had closed off all the way, I could’ve had like an instant heart attack or something. So, I feel very lucky to be here.
– James, age 20, Anomalous Coronary Artery
I’m a senior in college, and I work during the school year and during the summer I have a full time job. For hobbies I like to get out and golf, I like to hang out with friends, work, and just watch sports. I’m studying business administration and sports management.
I was diagnosed when my mother was pregnant. And then I had three open heart surgeries- the first one was within the first week I was born and the last one was by the age of three. Other than that I’ve had a couple other catheterizations and other minor surgeries here and there. I’m trying to think when I really remember having my parents tell me. I don’t really remember, but once I started going to school that’s when I noticed it more just because I wasn’t your everyday kindergarten or first grade student. So I think that’s probably when I’d remember it the most.
– Jake, age 21, HLHS
Reacting to my diagnosis
I’ve been scared many times. Well I think my parents were more scared then because I was much younger and we didn’t really know what it was. But now I understand what SVT stands for, and I understand that it’s not like, life-risking. Sometimes it can be a little scary when I first get it, but I always kind of understand that it’s fine and that it’ll stop. It’s painful for when I have it, but when it’s over, I feel back to normal, maybe I just feel like a little dazed for like a few minutes but then I’m fine. It’s just scary for like a minute or two, but then it’s over….Well I don’t get SVT that often. I usually got it, like maybe like twice a month maybe?
– Emma, age 9, SVT
I remember the last surgery that I had just because that was when they moved the location of the pacemaker, and I remember being kind of apprehensive about that, just because it was a change and I was going to have a different scar and it was a hard time to have to adjust to that when you’re in middle school and you’re already going through a lot of changes. I feel like you’re already pretty self-conscious as a middle schooler. So I think that’s probably the one that I remember the most. I guess I just remember being nervous about it but then afterwards it all worked out fine. And I feel like- I mean, these are some of the best doctors here and I’m fortunate that I ended up working with a plastic surgeon who helped with the scar and stuff. I had a lot of resources that I was very lucky to have. I mean, the doctor that did the surgery has done thousands of these surgeries, so it wasn’t going to be a huge deal.
– Emily, age 19, Pacemaker