Helping my child cope with having a heart condition

Miranda: I took her three days after we got home to the pediatrician to get that chest tube stitch out, and she was fine in the office, but as soon as we got in and I sat on the exam table, she started to really lose it. She definitely had this association of someone pulling out a stethoscope, someone listening to her heart, and then the act of someone poking around and trying to take a stitch out, she got much more upset about that than she normally would have I think. But on the flip side, when we took her to the cardiologist after that, she was pretty calm, and he listened to her heart and she just had this look about her like, “I’m watching you. If you do anything more than listen to my heart we are going to have issues with each other.” So there’s definitely a weariness, but also a familiarity with someone listening to her heart or—Allen, you went to her echo and you said that went fine.

Allen: Yeah, those two appointments were within the first week. I took her for an Echo and you would’ve thought we were going to the zoo. She had a great time. Maybe we just got lucky with what they were showing on the TV, but we sat in the waiting room and she watched TV and then when it was time to go in, we went in together and she got weighed and measured, and I sat down on the chair, she sat on my lap, we watched TV for half an hour as they did the echo, and we went down and had a muffin and she thought it was great. Maybe she’s a pro now. I don’t know what it is, but she had a great time. Sometimes when mom’s around there’s a little bit more anxiety just because mom’s the safety net. That could be a part of it too.

 – Miranda and Allen, parents of Serena, age 2, ASD


He usually has a catheterization every two years and I know how invasive and how serious even that is. We play it off to Austin as, “It’s just a cath, we’re going to be home in one day.” The last one he had, I remember he had a difficult time. It was during this past year and he was petrified. He had just been talking to his teacher at school, she knew how scared he was and how nervous he was about it, it had affected him at school. He said to me, two nights before we went in, “What if we just don’t go? Will I be okay? What if we just don’t go?” And I explained to him, “Your doctors all know what’s best for you, and we have to go.” Though I know that many times before, especially when he was a baby and I knew I had to hand him back over for a surgery, I used to think “Just don’t go. What if we just don’t go?” Of course we’d never do that, but it’s a thought. You just don’t want to do it. You just don’t want to do it.

He’s gone through the same emotions that we’ve all gone through—you get mad, you get angry, you get scared, the “Why?” He went through the “Why me?” Getting upset has been more of, “Why can’t I play football? Why can’t I…” as he gets older.

The fear of going into the hospital—there’s so many reminders to him. I mean, he’s finally starting to get a little better with having a blood draw or if he’s got to go in for a lung scan and he needs an IV put in. He went last year, he did amazing and I look back over the years and think, “Oh my God, he’s come so far.” It has been so traumatic for him. I can’t even count how many times he’s had to be stuck with a needle, or gotten an IV. He’s so much better than he used to be. And that’s been gradual.

I remember when I started him in preschool, and it was the first day and he got dirty. The preschool teacher had taken him in to get his change of clothes, and she put on the gloves, the plastic gloves. And he went crazy. Hysterical crying, they couldn’t calm him down, they called me like “We can’t calm him down.” I went racing up there and picked him up and he just was crying hysterically. She said “I don’t know what happened” and as soon as she said, “I went to put on gloves,” I said “That’s it. He thought you were going to stick him with a needle.” And I said “You know what, we’ll try this again next year.” I wasn’t ready. I came home and told my husband “He’s staying home with me another year. He’s not ready, I’m not ready.”

 – Grace, mother of Austin, age 10, TOF


Nathan: I think it’s been so long since we’ve had to deal with any issues, it’s not even stuff that she thinks about right now. The only thing she deals with on a daily basis and she does a really good job with it, is taking her medicine and moving on. It’s a secondary thought. It’s just a normal day, take your medicine and do everything else like a normal family, a normal person.

Donna: We strive for normalcy. We didn’t go through all of this to live in fear, live in a bubble. You know, you go through all of this to help your child have the most normal life that a child can have.

 – Donna and Nathan, Mother and Father to Leah, age 10, HLHS


From the time she could really understand, she understood that there was something wrong. Her surgery was all about her knowing what they were going to be doing. With her pre-op visit, the doctors explained it at an appropriate level, they’re very good at making the whole family aware of what’s going on and not just telling the parents and having the kid out of the room. They think it’s important for the child to have an understanding of what’s going on, and I agree with that, so she knows that she’s going to get a defibrillator at some point.

At this point I think she really wants to have the defibrillator because we carry an AED around with us, and she has to take it with her when she goes places and it’s always wherever she is. At school it’s the same thing, whenever they go off property at school on a field trip or something like that, there’s a backpack that goes along with her with her AED in it, and that bothers her at this point, like “I really just want to get rid of the backpack, when am I going to have this thing put in me?” So she sees it as something that will normalize her life and make her appear more like all the other kids because she doesn’t have something that’s a physical reminder and a physical sign to everyone else that she’s different somehow.

So there have been times when Raegan has gotten really frustrated with it like, “Why do I have to do this? Why can’t I do this? If I could do this when I was little why can’t I do it now?” We’ve had those conversations and she gets really frustrated. She’s very stoic and very tough and she tries her hardest not to cry, which I don’t get, but that’s just what she’s made of. We’ll sit together and I give her a hug and I explain it as best as I can. I said “I know, it’s totally unfair, it totally sucks, it’s no fun, it’s all the bad words you want to say put together, but that’s the way it is and we just have to deal with it and we have to hope that there’s new good medicines and treatments coming down the pike. Someday this isn’t going to be as much of a problem as it is now, but this is what it is now and we just have to live our lives around it and not let it control our lives.”

We’ve gotten very good at that, lately I’ve probably gotten even more lax with her. I let her go for walks with friends without her defibrillator, I’ll let her have a sleepover and I won’t like meet with the parents ahead of time and explain everything to them. Just a couple weeks ago she had two other kids at the house and one of them knew about the condition so I had her bring her backpack and I told her, “Just make sure Abby knows where the backpack is because if anything happens, Abby knows what it’s for. She may not know what to do with it, but she’ll at least know to tell the parents that this backpack that has the machine that you use if this happens.” We’ve been told that after the myectomy, the chances of anything happening are so slim at this point, it’s more of, “Well we have the defibrillator anyway, we’ll just keep it. We might as well just send it with her.” But there are times that we send her without it because I want her to have as normal a childhood as she can have. So I resign myself to saying, “Okay, she needs to have a normal childhood, so I will take on that extra risk and I will take on whatever repercussions, I’ll own that, so that she can go out and do things just like everybody else and not feel as though she’s hindered.”

 – Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker


When she got released, it was recommended that we actually have family therapy. They said with Chloe especially, but with all of us there was some chance of post-traumatic stress disorder. Family therapy was myself, my wife, my son who must have been 13 at the time, and Chloe. The four of us have different ways of coping with things. The four of us have different ways of coping with Chloe’s situation. So to sit us in a room and ask us all the same question and expect us to speak up—we didn’t. And if we did, it didn’t cause an argument, but it did cause some tension, which I think our therapist saw fairly quickly, so he disbanded that. He was like, “This is making things worse instead of better, I need to see Chloe, not you guys. If you guys want to go and see somebody else, I can recommend somebody or I can help you with that. I believe the best treatment for Chloe would be one-on-one play therapy.”

She was big into baby dolls, looking after baby dolls, all of that, so she’d take her baby dolls down to his office and they’d play. I’d sit outside and listen and hear the two of them playing. It was like she had her bestie over. Her dolls would be injured, they wouldn’t be injured with a band aid or a little bandage, they’d have tracheotomies or they’d have major scars on the top of their head where they’d had some brain operation, and they all of course had the heart injury scars. To me it was, “Why are her baby dolls so sick? Why can’t they just have a broken leg from falling off the swing?” But as her doctor said, “This is what she knows, and this is what she is trying to come to terms with, and to her, this is normal.” Basically, the majority of the kids on the PICU had tracheotomies, and that was what she was used to seeing, that was normal.

Something he said that really stuck with me was, “No person is supposed to have a concept of their life ending until they reach middle age.” It’s not something teenagers or people in their twenties, even thirties really think, “Well, I’m going to die one day, and what’s going to happen then?” But she had to face that reality when she was six. She’s at a point in her life that she’s reached before she should have.

So she saw her psychiatrist up until a point where he was leaving to go work at a different hospital, and he said to us at that time, “Chloe can continue to see somebody, but in my opinion, I think she’s got all the benefit she’s going to get from it. She may need it when she gets a little older, maybe when she’s a teenager things will arise that she’ll need to go in and look at again, but not where she is at the moment.” One of the main points he said was, “Look at the baby dolls. They’re not as sick as they were.” Before, some of them would die. He said, “None of them die anymore, and they improve, they all improve. There’s less going on with them, they’ll come in and they’re much better. Look, this one had this thing in its throat removed, that’s a big thing.”

 – Jim, father of Chloe, age 13, CPVT


Melanie: James knows I’m the one with all the details, and they both know that Mom has this need, because of my training, to do this, so they back off and let Mom take off with it. I’m on the phone with the pediatrician talking about this. He comes to his father knowing his father doesn’t know this much about it and says, “Dad, could I die from this?” and he didn’t mean from the defect because Walt said, “Well yeah” he goes, “No, from the surgery.” I remember Walt saying to him, “Well that’s why Mom’s working on getting you to Children’s because they have such a success rate at fixing hearts.” And that seemed to satisfy him.

Walter: I basically explained on the whole scale, “Yeah, things can happen, but from what they talked about, the operation was fairly straightforward, it wasn’t as complicated as other surgeries they did, and the chances of success are just really, really high” and that seemed to answer him.

Melanie: So I think he came into it feeling like he was going to be okay.

 – Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery


Something that I think has been so valuable for us as a family and particularly for David is you get a message from all of this that life is not perfect, there are things that go wrong, there’s stuff that gets broken, but there are solutions to the problems, and there are ways to get things fixed. Every one of these trips to Children’s with David, with the older boys—one son had to go through two surgeries for spinal fusions at Children’s, and the other twin son had a skin issue where he had to go in for a number of surgeries, so we’ve just been back and forth there so many times. I think everyone in the family has come away with the message that if something’s wrong, you fix it. So the stress every time you go to Children’s is obviously a fear of the unknown, there’s things that may go wrong, but the reality is that we feel so fortunate to be able to go to that great hospital and get the care that’s available to fix all these problems. I know that there are so many families that are regretfully dealt cards with problems that can’t be fixed. Fortunately with ours, we have been able to fix every single one of them, and so that’s kind of the spirit that I think carves through some of the stress, every time we walk through that front door.

 – Richard, father of David, age 23, TOF