The day they gave us Avery’s diagnosis of SVT, they were telling us what it, here’s what to look for, here’s what it feels like to them. All of a sudden I said, “Is this genetic?” and he said “No, it’s not genetic.” I said, “Because some of these symptoms sound very familiar to me.” And he said, “You should ask your doctor.” And so because of Avery’s diagnosis, I talked to my doctor about a month later, they put a Holter on me, and I have SVT. And I’m going to have a heart procedure. And because of Avery, I found this.
For me, something that was my normal, I thought it was anxiety. On the really bad ones I’m like “Oh my god, what’s happening to me?” But I never really knew to advocate for myself in that way. In a way, Avery gave me the strength to do that for myself, and to speak up to my doctor and say “I don’t think this is normal.” It’s cool to me that we’re doing this together. I had to wear a Holter for a long time, for about a month, and Avery was very concerned about it, she was very concerned about the wires. She had a real fear of the wires, of any wire after her hospital stay. After a month she got used to it and she was more concentrating on the different colors and it became normal.
Then a couple of weeks ago, she had to wear one and I reminded her of when I had to wear one, and she was fine with it. I said, “Just like Mama goes to the heart doctor and you go to your heart doctor to keep us strong and we’re going to do this together.” I think people were looking to me to say, “Oh my God, how are you handling this, you guys had such a tough year,” but to me it was comforting to know what she was feeling. That was my first reaction, of “Oh! This is what she has? Okay. I’ve lived for 34 years with this, she’s not going to die from it.” And it’s a really hard thing to explain to someone how it feels, so I’m happy I know, so she can feel understood in that way. So, we’re in this together in a lot of ways. That’s pretty special.
– Jessica, mother of Avery, age 2, ASD
Willow’s the youngest, then I have a daughter who’s 11 who has a normal EKG, and then my son who’s 13 who has the abnormal EKG. Only Willow has actually had the genetic testing done, but my son has a slightly abnormal EKG, and so he has been treated as a presumptive genetic positive. While she was in the hospital they did EKGs on my other kids, they were tested after she was born.
– Catharine, mother of Willow, age 8, Long QT Syndrome
I was born with coarctation of aorta, and they didn’t discover it until I was seven years old. I’m not quite sure how that got missed by the pediatrician, but it did. So I had open heart surgery when I was eight years old, and I remember all of that. When we got pregnant with Leah, I knew they were following us closely because I had a heart defect, but I wasn’t concerned about it, because I lived a very normal, active life, I had the one open heart surgery and no issues after that, so I just kind of had it in mind that I was fixed, there was nothing to worry about. But I’ve since learned that I do have to worry about myself and keep tabs on my heart, especially as I’m getting older.
In the beginning for me there was a lot of guilt because I felt like Leah’s defect was because of me. And it’s a ridiculous guilt, but it’s still there nonetheless. And I was told that no one would ever be able to tell me that because of my heart defect that’s the reason Leah has hers, but it’s just a strong coincidence that we both have left-sided defects. So I struggled with a lot of guilt in the beginning. I don’t so much anymore, because I know it’s irrational, and there’s nothing I can do about it. I don’t have control over it, it wasn’t like drinking a Coke did it, or eating a french fry did it, it’s just one of those things. So I think that’s probably the hardest struggle that I’ve had is just wondering if it was hereditary and if it’s because of me that she’s so sick.
– Donna, mother of Leah, age 10, HLHS
I was diagnosed when I was 24. I was followed until I was 18 here at Children’s Hospital in Boston, but at 18 I had an adult heart and it looked completely healthy, so they essentially said—and this was pre-genetics, so they didn’t know—I think they suspected it was genetic, but they hadn’t identified the gene yet, so at 18 they essentially said, “You have a perfectly healthy adult heart, if you don’t have it now, you aren’t going to get it” so I was sent on my merry way.
It was in college that I started having some symptoms and suspected that something might be going on, but again I had been told I didn’t have it and would never get it, so I ignored them. Once I was about 24 I started having episodes of fainting, and at that point it was like “something’s going on.” I didn’t know if it was my heart, but I thought I should at least look into it, and that’s when I was diagnosed. So obviously it was hard early on seeing Raegan go through this, especially when she’s had to go through surgeries and coming out of the myectomy and seeing her all hooked up to the machines and pale and the tube down her throat and the horrible scar. They cover it, but they don’t really cover everything, so you can see some pretty ugly stuff when the kids first come out of the OR, because it’s just the tape at that point because they need to keep an eye on it. So that was hard, but I don’t know that it was any harder for me because I have the condition.
I’ve never like felt guilty that I gave this to her because that would be like me blaming my mother for giving it to me, and I never did, it’s just not logical. It’s more just the typical stuff, the parenting response that you don’t want to see your child going through something that is really hard for them and it could get harder and that causes them any distress in any way.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
We had no warning. We actually assumed that it was not genetic. We really thought that because there’s no history in my family, there’s been no sudden death, we thought that it was hopefully just me. But I never really exercised before, so maybe that brought it out. She did exercise, and she’s a real tough kid and every once in a while if she’d go running with my husband or something he’d say, “She seems a little out of shape!” which is weird because she was in great shape and she did CrossFit class and didn’t feel well during it, and now that I look back, those were my symptoms too, that I had.
– Amy, mother of Rebecca, age 19, ARVD