Hearing that we were part of this one percent of children born with a heart condition was so shocking to us. You never think you’re going to be that one in 100. I think that was sort of the biggest challenge for me, was moving from this pool of, “Oh no, does she have an ear infection, is she teething,” and having that be a big deal and going to the pediatrician for that, to going to sitting in a cardiologists office. Now you’ve leaped into a different pool of kids who have a heart condition and for me that was really difficult. What did I do wrong? Did I do something during my pregnancy? I thought I did everything right. I breast fed for a full year, I did everything by the book. How did this happen? It’s hard not to question yourself in that way. But then you’re in this pool of kids and you’re dealing with these specialists who for them, it’s their normal.
– Jessica, mother of Avery, age 2, ASD
The first thing in my mind would be just getting answers. The first challenge was getting a diagnosis and getting answers. That felt like a huge challenge. And then, once we had that, the second challenge was just the waiting game and the uncertainty. Once we had the answers and we had the diagnosis when she was three months old, it was the uncertainty of knowing that if she hadn’t gained half an ounce today, she could be in heart failure again. Going in and out of heart failure* saying, “Are we going to have surgery? Are we not going to have surgery?” Part of it is just, I’m a planner, I always have a plan, and there could be no plan. There was nothing that I could do to change it. And that was huge. That’s hard to feel so out of control.
– Anna, mother of Elizabeth, age 2, VSD
I think it would just be the feeling of being so alone in it and not having resources—not having a book I could consult, like “Okay, Zach has all of these issues, where’s my textbook on it? Where’s my road map for what to do?” Just feeling alone in terms of how to best help him and also finding people who could even begin to relate or understand what we go through as parents too. Even just between us, we handle things so differently that we’ve been in the same situation but you can still feel very lonely because you just don’t know what to do.
– Alice, mother of Zach, age 3, Single Ventricle
The greatest challenge I think is just accepting it all, initially. Accepting that she had such a complex heart. I questioned for a long time why it happened to her. I had a lot of guilt that it was something that I had done in my pregnancy, even though I was told repeatedly it was just the way that her heart developed. I think it’s been a lot of challenges instead of just one particular thing. Things like accepting what was going on, then the challenges of just trying to be ahead of the game, anticipating what’s going on and when she’ll need to go back. Also being her advocate because she can’t be her own advocate just yet.
Day-to-day, there’s still worry even though she’s been through two surgeries and her doctor is telling me that she’s at a really good place, she’s healthy. I think it’s fear too—not knowing what the future holds, hoping that she’ll never need a heart transplant or that she won’t need another surgery, that she won’t need another surgery after that surgery. It’s hard to put into words exactly what the challenges are, it changes. When we got closer to the surgery, it was the challenge of getting through it, emotionally, mentally, being strong for her and then the challenge of day-to-day after that through her recovery.
A lot of times, luckily, it’s not at the forefront of my mind that she’s got all these heart issues, because she acts like a normal kid, but the challenge again is just accepting what the future could hold and not knowing for sure what avenue we could go down again with her.
– Roxanne, mother of Amelia, age 7, Dextrocardia
The most challenging issue is the uncertainty about any time there could be an emergency. I think it has helped to try to be as prepared as possible, to be CPR* trained and to try to be as prepared as we can so friends she goes over to their house, their parents are aware and are CPR trained.
– Catharine, mother of Willow, age 8, Long QT Syndrome
There’s one conversation we’re going to have to have, but I’m not sure how we’re going to do it. It’s about the fact that I have the Lupus antibody* that she has, and the complete heart block. I think one day we might have to have that conversation. I’m wondering if that’s going to be a hard conversation, but for the most part, it’s really just the fear of having another operation. I will say, she ended up having an IV in her head at one point, and that was a hard thing. I look at the pictures and tear up. I think I’m on this side where I’m so much more optimistic, but it’s a hard thing to go through, and I don’t want to be too light on that.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
The greatest challenges were the surgeries for sure, the more invasive procedures and getting through and trying to stay as positive as possible. We’ve been so fortunate that he’s been a healthy kid that sometimes we almost forget at this point. Every once in a while I get knocked back into reality and we’ll get a little panicked thinking about if the next shoe is going to drop kind of thing, but I think we’ve been fortunate that life has been kind of normal. It breaks our hearts when we see that he has a hard time keeping up with other kids, and sometimes that affects his relationships. But it’s not something that we dwell on every day, but as a parent, it’s very hard.
– Abigail, mother of Johnny, age 9, HLHS
The biggest challenge is the unknown and knowing that things could change on a dime. God willing, they’ll just continue to go well. I remember the first time we were up at Children’s, talking to doctor and my husband finally asked the question, he said “What does this mean? The longevity of his life, how old is he going to live to?” And the doctor looked at him and said, “Married with children.” Which was great to hear.
I remember many, many times when Austin was a baby being told, “He’s a very sick boy. He has a very life threatening heart defect.” It’s been repaired, but my husband and I both know that he needs lifelong cardiac care. His heart is still very different from what most babies are born with. So that’s probably the biggest issue. In life in general, there are no promises. Anything can happen and you don’t take things for granted. But there’s that extra sense of, you just hope that he continues to thrive the way he has been. He’s an all-star on his little league team, he played last night and won. He was slamming the ball, he was pitching it, mouths were dropped because he’s this peanut on the mound and he’s throwing the ball faster than a kid twice his size. We just went to the beach for vacation, and he’s out on the golf course with my husband playing 18 holes of golf. Sometimes playing tennis with my husband. He’s just a remarkable child that loves life and he’s just truly inspiring.
– Grace, mother of Austin, age 10, TOF
It’s hard to explain to people that my 11 year old is in heart failure. Not congestive, but essentially she’s in heart failure. She doesn’t look like it, but she is, and it’s never going to go away. You can’t think that the myectomy* completely fixed it. I had so many people that would come up to me after her procedure thinking that she was fixed and healed, but that’s not the way it works. And as she’s this age, she’s getting tougher about things. She wants to push herself more and she wants to do more and she gets very frustrated with me because it’s typically me that’s doing the reminding or saying no. I’m sure there are days that she doesn’t really like me. I think overall I’m still good in her book, but she has her moments where I am not the top person on her list.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
The biggest challenge was that it was not something that we ever expected, because no person would. Then you have to face what happened to you and people come up to you and say, “You’re very brave, I don’t know how you could have done that,” and I want to say to them, “Nobody knocked on my door and said ‘Do you want to do this?’ I was never given a choice.” None of us were given a choice, it just happened to us. And as a matter of being brave, nobody’s brave, it’s not “brave”—you have to deal with what’s happening as it’s happening, because it’s not about you, it’s about your daughter, who it is actually happening to. And that’s a big challenge to keep in perspective—how it’s affecting you, but you have to almost step away from that a little bit because my job isn’t to worry about me, it’s to worry about her.
When we were in the Pediatric ICU, one nurse said to me, “You have to sleep at some point, because if you don’t sleep, you can’t look after Chloe,” which is terribly cliché, but you’re like, “Well if I sleep, something might go wrong.” But I’m not treating her, I’m just sitting there. So if something does go wrong, the people who can help her are awake and they’re there. So you have to let go a little bit. As a parent you’re protective, but you have to let other people who are more qualified than you to actually deal with the situation.
People’s reactions to us are a challenge sometimes. We live in the small town, so sometimes people know us when we don’t know who they are. After this happened to Chloe, there was a lot of media attention about her, so more people knew who we were. In the early days, we’d be walking around the supermarket and people would stop you and start asking questions. I had one lady who came up to me and said, “Oh you know I think you’re wrong, she didn’t have a cardiac arrest. Look at her, she looks great!” So people will say stupid things, and that was a bit of a challenge. People would approach my wife about it, and she’d get mad. And I’d say, “People only mean well. They just don’t know what to say a lot of the time, so they’ll say something. You may think it’s stupid what they say, but people just mean well.” People are not being malicious—even the lady who said “I think you’re wrong” was just trying to make us feel better.
– Jim, father of Chloe, age 13, CPVT
The greatest challenge is knowing where the limits are. Knowing what she can and she can’t do, how seriously we take things, how not seriously we take things, that’s definitely the hardest thing. Do we let her go away to college? Nobody knows the answers to these things. We have guidelines, but it’s that not knowing, not knowing what’s going to happen, not knowing if we’re doing the right things. That’s super scary too. If there’re decisions to be made, I don’t know if we’ve made the right decisions.
– Amy, mother of Rebecca, age 19, ARVD
You feel like you’re alone in this, and even though James doesn’t have to come back to see his cardiologist again, I will be emailing her and telling her if she wants to continue sending families our way we are more than happy to continue talking with them, because it’s very positive for me to talk with the families. You feel like you’re all alone and that you’re the only one going through this. Especially, I think with the older kids. If you go on the ward, there’re babies and young children everywhere that are having cardiac repairs done, but not so much in the older kids. Also especially when you go from a kid that you thought was completely healthy to having a potentially lethal heart condition, your world goes upside down. We had this vibrant, athletic kid who now could drop dead, and you feel alone. Even on the ward we didn’t have much in common with anybody else, because it was mostly little kids, and I think that is hard for families too.
– Melanie, mother of James, age 20, Anomalous Coronary Artery
He’ll complain about having to take the meds. Every now and then he’ll say, “I’m going to die young anyhow.” I try to let that stuff go in one ear and out the other because I think as it is, I’ve been a bit of an enabler. I’d probably just say—it’s hard. I mean, it will be challenging some times more than others, but support is available and you should take advantage of it and whether it’s talk therapy for the child or therapy for the family in dealing with it.
– Louisa, mother of Gabriel, age 20, HLHS
One of the hardest challenges has not been the medical for me, but the emotional, social, academic stuff that Jake has faced. And trying to strike a balance between acknowledging his struggles, and that there are very legitimate, concrete reasons that he is struggling—his teachers at school called him lazy. He’s not lazy, that’s not what it was about. Sure he has lazy days, we all do, but that’s not why he was struggling in school, it never has been. So acknowledging his struggles without letting him sit there and use it as an excuse. Trying to strike that balance has been really hard. I think most of the time we do it pretty well, but there are other times when we don’t.
His transition to college is probably his most recent one that I’m still focused on. That first semester in college, I made a conscious decision to let him sink or swim academically, and he sunk like an absolute rock. I will never forget the image of him sitting at the dining room table as he got his grades and found that out, and being so devastated for him because it was happening and also because I know that it’s because of his half a heart and the things that go with that. It wasn’t lack of effort, it was that he’s different. He is. But at the same time, knowing I couldn’t let him use that as an excuse, and I had to not let him wallow. It was a very sad, difficult period for us and I think we worked really hard at pushing him to take responsibility and fix it and make it right, while also acknowledging that we understand why it happened. That’s a pretty tricky balance to strike.
– Diane, mother of Jake, age 21, HLHS
We’re fairly social people now that we’re 50, we have lots of friends and we do lots of fun things. We joke we had no friends then. There was a bagel shop a town over and we would go over there at eight o’clock at night, right before they closed with the babies, because they would clean, and there was no one else in there. We sat and had a cup of coffee and a bagel. For four to five years that was all of our social life. But it worked, because Jake really didn’t get sick, if he got sick it was really infrequently. That was kind of the sacrifice that we made to keep him well. If someone would come over to look at the baby, we’d just run out of there. So that was a challenge.
There’s the physical challenge of just getting them through it and making the sacrifices that you have to make, and of course we’re happy to do it. And watching him, emotionally watching this kid go through what he goes through, like all parents of sick kids do. So there’s that. But there’s also things like—Jake’s illness hurt us financially, it set us back quite a bit. So there’s the emotional part of watching your sons, one watch it and one go through it, it’s terrible, you lose a lot of sleep. And then there’s the kind of nuts and bolts part of it, which is, you don’t have any vacation and you don’t have many friends and you don’t have any money, but you have a child that’s getting better. That supersedes everything. So as far as the biggest challenge, above and beyond I think for us would be physically and then emotionally it’s a haul.
– Bill, father of Jake, age 21, HLHS
For David and for us as parents, the challenge is always getting the reality check that he’s not like everybody else. There have been conversations about drinking or marijuana or his diet or exercise is one. He has to live a heart-healthy lifestyle among other things, so for us it’s been the ongoing challenge is just not losing sight of that. It’s so easy to become overconfident, because I mean when you see him he looks so healthy and you’d never know.
– Richard, father of David, age 23, TOF