Our pediatrician here knows to take her white coat off before she comes in the room. Like, don’t wear a white coat in front of Elizabeth or you’re going to get yelled at. But actually, she just started preschool, so we’ve talked about it a lot because for some reason, there are three kids who had open-heart surgery in her preschool. And it’s a small school.
So we bought the book “Zip-line,” it was written by a dad, a Boston Children’s dad. It’s called “Zip-line” and it’s about a little girl. It rhymes, it’s very age appropriate, it’s not scary. It talks about how she was very brave. Well, so we started reading that to Emily before Elizabeth’s surgery, because we didn’t want her to be scared when she saw the incision. So we started reading it originally to Emily and now we read it to Elizabeth, and I donated the book to the preschool because they read books to them, and if three of them are there with open heart scars, the other kids need to know. So now she talks about her zip-line, and it’s kind of funny because she’s like “My zip line can get wet, I’m so brave.” Because she sees me at the pool and she’s like “You don’t have a zip-line, I have a zip-line.” She’s proud of it. And I want her to be proud of it. I think about that. Like, the first time she ever takes her shirt off in front of someone, I want her to be really proud of it. It’s almost like a beauty mark.
– Anna, mother of Elizabeth, age 2, VSD
Allen: She sometimes points to her chest and says, “Boo boo-”.
Miranda: Or there’s one time, Mallory and I were talking about Boston and she was just like, “Don’t like Boston. Boston hurts” and then she pointed to her chest. Most of the questions have actually come from Mallory, like when she first saw the scar, or the incision, she was like, “What’s that?” and then, in front of Serena I said, “That’s where they cut her to get to her heart” and she’s like, “Did she cry when they cut her?” and I said, “They gave her some really good medicine, so she was asleep, she didn’t cry.” But I think Serena is a little too young to formulate the question. I do think she’s frustrated by some things, like I think she’s really frustrated she can’t take a bath right now so soon after the surgery.
Allen: Yeah, that’s a big one. Really, I think if she could take baths right now she’d be pretty okay.
Miranda: She’s just kind of frustrated if she can’t do things that she feels like she should be able to do. When we’re like, “Oh, you can’t do that,” she doesn’t quite understand it.
Allen: I think when we first got home we were constantly petrified because she didn’t appear to slow down at all, in fact maybe the opposite, like “You know, you just had your heart fixed, don’t go and crack your ribs or something.”
– Miranda and Allen, parents of Serena, age 2, ASD
Someone said, “Oh, how did you get that scar right there?” and she’s like “Oh, they fixed my heart.” And the next question was “Did it hurt?” and she was like “I was sleeping!” So it’s just so matter-of-fact. They told us that hopefully this procedure lasts until she’s in middle school and that seems so far away yet it’s still so close too. In conversation she’ll say, “Mom, when do I have to get my heart fixed again?” and I’m like “Hopefully not for a really long time!” And she just kind of takes that and she seems okay with it. But every appointment we go to—our last echo, which was this summer, she said to me—and it’s the first time, she’s six and a half and it’s the very first time she said to me, “Mom, what if my heart’s not okay and I need surgery right now?” And I was like, “What? Don’t be silly, it’s going to be great!” But it was the first time she’d thought about it. Prior to that, she wasn’t thinking that way. Now I’m sure each appointment she’s probably going to have a little bit of “What if?” But I’m so matter-of-fact and say, “Well, if we have to fix your heart again then we fix your heart again.” We can’t not do it, and if I could give her my heart, I would, but I can only be strong for her and help her not to be scared. Accepting that it’s completely out of our hands, I have to put 100% of my faith into her doctors that they’re going to do the very best for her every single time and they have.
– Erica, mother of Isabelle, age 5, Anomalous Aortic Valve
We talked about how the heart works as a muscle that needs an electrical signal and that there are these tunnels that open and close in her heart that send an electrical signal and that those tunnels, or channels, don’t work the way that they should. So she has a potential to have a problem, and she needs to take medication. We talked about the anatomy and physiology, we brought home an AED and explained what it could potentially be used for. We just tried to give all the kids information so that they were less scared about it, as a matter-of-fact like, “This is just a part of our life.”
This one time she was swimming and she felt her chest pounding, so she got out of the pool and just said, “Help me, help me.” I tried to express to her that that was really important that she was paying attention to her body and that she got out of the pool, to make it feel like she had some control over the situation.
– Catharine, mother of Willow, age 8, Long QT Syndrome
I just kept telling her that there was something wrong with her heart—we had always told her when she got to the age where she could realize her chest was not normal compared to her brother’s chest when she was little. And one day she had asked me, when she was little and I said, “God picked you out of all the little girls in all the world to have a very special heart, and that he knew that you could handle it, he picked me to be your mommy to help you through it, and your daddy to be your daddy, and that there was a boo boo on your heart that needed to be fixed, and Dr. del Nido fixed your heart. You have this scar, it’s your bravery scar to show you how brave you are for what you’ve been through.” And that’s kind of how we treated that when she was younger. Now that she’s seven she knows that that’s her scar from where they went in and fixed her heart and she has two little x scars on her lower chest and she knows that’s from the chest tubes that helped heal her heart. I try and keep it very basic but still give her some knowledge and some control over what she’s been through. She’s had a lot more questions this time, which is kind of an eye-opener. Some random questions, like one day in the car she was like, “If I have this surgery am I going to die?” It catches you. There were times when we sat down with her and explained what was going to happen and that we were going back to Boston, and they would put her to sleep and Dr. del Nido would fix her heart and she wasn’t going to have any pain, they’d give her special medicine, and then randomly you’re knocked off your feet by, “Am I going to die?” and it’s like “Wow.”
She didn’t, surprisingly, ask a lot of questions at her recent surgery, she was more upset with things that she couldn’t do. She couldn’t go back to school right away, she couldn’t play at recess for a while until she was cleared at the six-week post-op point. That was more upsetting to her, which was great because she wasn’t focusing on what she had been through, she was just focusing on why she couldn’t go back and do her normal things. So, when she couldn’t do recess and she had to sit in the nurses office, she was able to pick a friend every day to sit there with her, and I would send in little surprises for her from the dollar store—a craft to do during recess to make it a little more fun. We just really tried to put a positive spin on it. You could certainly dwell on the negative, but the positive is it’s a better chance of life since going through another surgery.
– Roxanne, mother of Amelia, age 7, Dextrocardia
We’ve always talked about it, especially because she has an older sister, and we were telling her why we were going to the hospital. At that point the questions and understanding weren’t that great, so as we’ve continued, the questions have gotten more intense.
Now it’s that she doesn’t really like all the stickers and having to go. She was complaining and my oldest daughter said very frankly, “If you don’t go and have the other surgery you could die.” So, it’s good to have the wisdom of the older people in our houses. As a parent, you want everything to go easy for your kids on one hand, so I think there’s always this element of, “Oh, I wish this didn’t happen,” but the reality is “she does, and how do we make the best of this?”
The pacemaker camp is really cool now that she’s able to do that. She got to go to sleep-away camp even before her big sister got to go to sleep-away camp. I think there’s a way we’ve been able to celebrate having this, but I think there’s the hesitancy of maybe having to have another surgery, and the knowledge of that. Sometimes that is the hardest for her, but day-to-day, she’s a happy kid and we don’t usually talk about it until the yearly appointments or stuff like that. Now they’ve created this sort of pacemaker check where they can do it digitally, and so she likes doing that at home, it’s kind of cool. So we kind of talk about it when it comes up or people ask questions.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
He’s totally cool with having his shirt off and everything and he’s got quite a few scars, and I think sometimes that’s the first question, is “Where on earth are all these scars from?” And he so nonchalantly was like, “Oh, I had heart surgery.” And he just kind of moves on. As far as with not keeping up and that type of thing, he doesn’t really address it as a heart thing. He will just kind of say, “I need a break right now. I need to go get a drink. I need a rest, I’ll come back and play with you in a little bit.” Yeah, he doesn’t really ever bring it back to his heart. He knows that that’s the reason, but I’ve never heard him actually address it that way.
I think it’s just so, “It’s part of my life,” and that’s his attitude about it, at his age. I think it’s probably different when he’s older. But now he’s very nonchalant about it. I wonder, because it’s really been so long that he’s had anything major, because right now he knows and we’ve been very fortunate that he’s been extremely healthy, and he knows he has his echo or an EKG, and every now and then, he has a couple of tests or an X-ray, so those are so non-invasive that he really doesn’t think much of it. But I think if he had more complicated procedures, I think that the way he would approach friends or questions about it would be a little different.
He’s a hard one to crack with that kind of stuff. He doesn’t like to talk about it. I think he more thinks about it in the limitations, I think it bothers him mostly in the physical part of it.
– Abigail, mother of Johnny, age 9, HLHS
We’ve gone through trying to explain to him why he can’t play football and why as he gets older, basketball or soccer is not going to be an option because it’s too much cardio. He’s gotten upset, he’s cried, “Why me?” It’s just—it is what it is, it’s the cards that he’s been dealt and we just do the best we can. We’ve talked with him about it. We’ve never sat down and had the conversation of how bad that first surgery went. He doesn’t know about the ECMO. I don’t think that’s a conversation that will happen probably for quite a few more years, hopefully when these surgeries are behind him. He’s seen photos of himself after surgery in the ICU with all the tubes and wires and everything. He knows he was born with a special heart. If you ask him who his hero is, it’s doctors. He’s a smart boy.
– Grace, mother of Austin, age 10, TOF
For the best part of these last 5 years I would say now he’s been up there for a couple of caths and an overnight, and that’s it. But we know around the corner he’s going to have to have another surgery, we don’t know when. He’s asking questions and he’s nervous. And he’s smart, so he knows. He’s asking about the dangers of it, and whether he can make it or not and so on and so forth. Like, how do you answer these questions? Good grief.
They’re going to tell us when they do the MRIs and the echoes and all of the scans when he’s going to need to have a valve replaced, and then they’re going to have to do that. The longer they wait the better, because it’s based on size. When he asks about how big he’ll be I say, “You can’t choose how tall you’re going to be or how big you’re going to be. You’ve got to deal with what you’ve got, buddy.” And that’s the way it is.
We just talked about that because of the way he’s been asking these questions and it’s difficult. What do you say to your ten year old, “Yeah, you can die from this”? No, you don’t say that. I’d rather lie. Let’s talk reality here—are you going to tell your kid that? But if I lie to him, “nope, everything’s going to be fine,” there’s too much on the internet. It’s unblocked sites, medical sites, so if he wants to go read about heart type of things, he’s going to go read about it. He’s going to read about that, and it’s a very, very risky procedure, to be put on life support or bypass, and have your heart stop. To have them go in, stop your heart, repair it, and start you up again. He’s going to read that, and he’s going to be nervous. He’s going to be crying on the way up there, he’s not going to want to go. We’ve got a little bit of that with the cath, but he’s going to have to do it.
– Scott, father of Austin, age 10, TOF
From the very beginning we’ve always been very open and honest about it. We’ve told her very early on that she had this issue with her heart and we would use the name of it. I don’t know at what point it kind of clicked—now she can say it in her sleep, but we never hid it from her because it was something she had to know about early on because she had to know to tell us if she was feeling something. So as soon as she had the words and was speaking—we had taught her sign language before that so she could tell us if she had a hurt or pain, somewhere.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
She’s super active, if anything, it’s trying to rein her in. I have to have conversations with her sometimes reminding her that she has this disorder, and reminding her that she has to take things easy sometimes. We’re kind of getting to the stage now where things in her own life are changing. She’s not happy with it, but she’s accepting of it, because as I say, we’ve been very honest with her. “Chloe, you have this. You know what happened to you in the past. Unfortunately there’s rules you have to obey, and one of them being you can’t overdo things.” She says, “well, I feel fine.” And I say, “Yes, you feel fine, because we’re stopping. What if we didn’t stop and carried on, would you still feel fine? We don’t know.”
I feel as a parent or a 13 year old, I still have to make her rules for her. I don’t think that she’s old enough yet to make that decision for herself. Yesterday she left to go to school at seven o’clock in the morning, she had band, then she’s all day at school, and then she comes home for 30 minutes, gets changed into her Tae-kwon-do uniform, stays there till seven o’clock. I get the text at 6:45PM, “I’m staying for the next class until nine.” So I text her back, “Chloe, you’re not. I’m coming to pick you up now.” Teenagers. And she’ll say, “Why couldn’t I stay?” “Because Chloe. Because you have CPVT, and you’ve been going since seven o’clock this morning, and it’s enough. Sometimes you have to sit home, sit down, and relax.”
One of her concerns was, “Well, if I have children, will I pass this gene on to them?” and the answer to this is “Possibly, yes. It’s not 100% guaranteed that you will, but there is that possibility.” And what I say to her is, “You’re only 13 years old, you’re not having any children yet. So in like, 15, 20 years when you decide to have a child, things may well have changed. Things may well have progressed, the treatments may be different, so maybe even if you do pass it on to your child, we’re not going to be dealing with the same things that we dealt with you. And as an infant, your child will have the genetic tests anyway to find out whether they had it.”
– Jim, father of Chloe, age 13, CPVT
I would try at various points to talk to him about his heart, and he just didn’t want to talk about it. Wasn’t different, didn’t want to talk about it, not a big deal, and we spent so many hours and hours and hours. Bill and I had decided early on that both Matt and Jake needed us equally, and that the way we were going to divide that up was that if Jake was in the hospital, I would stay with Jake and Bill would stay with Matt, and we would try to keep life as normal for Matt as we could. And that was a very intentional decision on our part. We were able to do it because we live 40 minutes from Boston, and so they were still able to come visit. But I was the primary one at the hospital. So I’ve been there every night Jake’s been inpatient, and he’s never complained, he’s never said, “Why me?” kind of stuff, just always a very positive, upbeat attitude, but also doesn’t really want to talk about it or focus on it that much, if that makes sense.
It’s scary, because I always wonder where is the line between a really well adjusted healthy kid, and a kid who’s in denial. Because there’s a line, and I don’t know where the line is. And I have two examples. One is when he was in high school at some point, he lied to me for about six months about taking his Aspirin. He wasn’t taking it. Where did he get that from? I’m like, “You’re old enough to ask for it” but he just didn’t want to be different. And in my mind I was like “Well, that’s crazy.” Because you’re only talking about a little baby Aspirin that you’re- but it was just the point to him I think, it was an admission that he was different. And, you know, now he’s off at college and I don’t think he’s as well versed in his medical condition as he needs to be. That’s a problem. And he’s now on immunotherapy, which has literally changed his life, and mine, and I got a call from the medical supply company a week ago and he was like “Yeah, we haven’t sent Jake any medication in like ten weeks.” So he was intermittently using the medication and then not, and that’s just dumb and not safe.
I think he struggles with not wanting to acknowledge that he’s got that heart. And he shows some great maturity at times, and then some great immaturity about it. I think he struggles with it. I’ve said to a lot of heart families—I’m very involved now online and in person with a lot of cardiac, hypoplast families. Social media has changed so much and in some ways it’s wonderful and in other ways I think it’s terrible. I think that these families, and sometimes therefore the kids, define themselves by the heart disease, and I don’t think that’s a healthy thing. I’m really glad that Jake doesn’t define himself that way. But I wish he had a little more acknowledgement of it. There’s a fine line, there’s a balance, and I’m not sure he’s achieved that. I’m glad he doesn’t define himself by it, but it is a big part of who he is, and he needs to be smart about it.
– Diane, mother of Jake, age 21, HLHS