I want to protect her and I think about junior high girls, when girls become mean, as she develops, as she goes to the pool. Things like that, like, how do you talk to your daughters about that? How do you prepare them for mean girls? How do you prepare your child to explain to their first love, “This is what happened to me.” Those are the things that I think about. And we talked about it with her cardiologist—when she wants to have a baby someday, she’s automatically going to be high risk. The odds of her having a child with CHD are much higher. Things like that you just can’t help but think about.
I want my daughter to be proud of it, and I want her to be brave. At the same time, since she had surgery before age two, she’s not going to remember it. So it’s important to not make it be her defining feature. She has to live a life that’s not defined by her diagnosis. Even though it was a defining moment in my life, it can’t be for her. I can’t let her whole world revolve around it. I think that is really, really hard. When you’ve had a kid who you had to protect, you had to give her shots, you had to keep isolated, or who has been health fragile, when they’re suddenly okay, and all limitations released, watching them go for it is frightening. I mean, it’s awesome and I’m so excited for her, but at the same time I’m petrified. So it’s kind of like I’m torn—you want to let go, but at the same time I want to hold her back.
– Anna, mother of Elizabeth, age 2, VSD
One of the things in pediatric cardiology is that they will never tell you “never”. I think if a cardiologist tells you “never”, you probably shouldn’t be going to that cardiologist. The heart is an ever-changing, ever-growing muscle, and she is an ever-changing, ever-growing human being. There’s no way to know what her body is going to be like year-to-year, which is why she has to go back to the hospital and be seen once if not twice every year. So they are not anticipating any surgical interventions, but who knows. I hope they’re right, they’ve been right about everything so far, but if they came to us in five years and said she needs to have her mitral valve replaced, we can’t be surprised. It’s possible that some of the issues with her heart that have not been fixed, that have not presented as an issue may be an issue in years to come. Again, we will never know.
I really try not to think about her cardiac health that much, I just try to thank God every day that she’s as healthy as she is, and not let myself worry about it unless I need to. I’m more worried about normal mom things, like she woke up at 6:00 this morning—I don’t want her to do that again tomorrow. I feel like I’m able to worry about more generic things, and again, we’re lucky that I get to do that or that my husband and I get to do that. But I’m more worried about pretty much normal, everyday kind of things.
– Leslie, mother of Margaret, age 2, VSD
This is one and done for us in terms of a surgery perspective, which we feel incredibly fortunate about. You see it every day at Boston Children’s Hospital, but when you go in there—something about you know you’re going to go in there and it’s going to get fixed, and you see a lot of other kids around there and other families who aren’t nearly as lucky as you are, it’s a pretty grounding moment—a pretty grounding experience, I would say. So we feel very fortunate that this is the only thing we have to do. We’re going to get another Echo in six months probably to just check—maybe not even an Echo but just going to see the cardiologist again for the final follow up, and then after that, she’s a normal kid, she’s got a normal heart now.
– Allen, father of Serena, age 2, ASD
I used to always be so nervous about the future and the next appointment and the next appointment. I think because the two surgeries were so close and the echoes were not great each time that I felt like, “Is it now? Is it now?” And now I’m just like, “It’s just one appointment at a time,” and not thinking to the next one but more, “Okay, we just got through this one and it’s good, so we’re just going to go home and live our life and it’s going to be great, and when it’s our next appointment, it’s our next appointment.” I can’t look into the future at how many surgeries she’s going to need or anything like that. I can only live for right now, because right now she’s really good. And still it’s just—it’s so basic. My son is 10, he’s going to learn about the human heart and stuff like that and it’s going to really occur to him like, “Wow, how do they get into your heart?” And she’ll even say, “They had to break my bone to fix my heart.” I don’t know how much to tell her or not to tell her, but I don’t want it to worry her. I don’t want it to consume her, so I’m always just kind of say, “Your heart’s great right now! You have the strongest heart!” and she knows that.
– Erica, mother of Isabelle, age 5, Anomalous Aortic Valve
The potential for a third surgery is still there. She has to have a lung scan next year, and some of her numbers from her recent visit are not great. It’s upsetting from a mom’s point that she’s not 100% out of the woods yet, but it’s a blessing from where she’s come to where she is now.
– Roxanne, mother of Amelia, age 7, Dextrocardia
The reality is that as a baby, she did not know what was happening to her. So now the next one she’s going to be a teenager. I didn’t ask yet, like—they open her shirt, and my oldest is developing, and I was like “How does that work?” I’m asking new questions as she’s getting older. Like, “Is that awkward for the girls that they’re doing echoes and EKGs?” and they said, “You know, it’s really not a problem.” So that was something where I feel like our stories are going to continue as they get older and different.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
He knows that he has another surgery ahead of him. At one of his last appointments it was discussed it in front of him. As for the timeframe of when is the next cath, the next surgery—those are things that I need to say to the doctor ahead of time, “Let’s have these conversations without Austin in the room, because he gets anxious about it.” At the time, the conversation was about all of this happening as a teenager, the next surgery, and that’s what Austin is hanging on to.
He’s got a regular appointment this summer, and you just hope every time you go in that it’ll be, “See you in six months for another cardio appointment,” and not, “Okay, it’s time.” So there’s some anxiety going in to any appointment, even when it is just a checkup.
It’s very easy, once we walk out of the hospital, and we know he’s doing well, to almost put up a wall and shut that part out. It’s always there and I know it’s always there, and I know we’re going to go back to it, I know there’s more ahead of him, but it’s easy to shut the door and not dwell on it, not think on it, to come home and be a family.
– Grace, mother of Austin, age 10, TOF
She said she wants to be a cardiologist, initially. Then she wanted to be an electrophysiologist—anything to do with hospitals really. She doesn’t like the sight of blood so I said, “Well that probably isn’t going to work well for you.” But she loves anything to do with hospitals, I think because she feels safe. She feels like it’s the safest place for her because she is aware of what happened to her, and she’s aware it could happen again. That’s the thing, she knows it can happen again. She knows she has medication to help her, and she knows she has the ICD, but that’s not going to stop her from having another cardiac arrest, and she’s very aware of that fact. When she’s in the hospital, she’s in the safest place she could possibly be.
– Jim, father of Chloe, age 13, CPVT
In high school he definitely always said, “I’m going to college.” And now he’s definitely, “I’m going to have a job.” I think he’d probably love to do something in athletics, in the business side of athletics. So I think he definitely thinks about the future. But interestingly, he waited a long time to get a driver’s license. I think Jake never had that typical teenager attitude, “Nothing bad can happen to me.” I think he knew bad things could happen, and he was nervous to drive. I’m not sure he thinks about a family in the future. Kids come up and he’s like, “Oh, I’m not having kids.” I mean, he’s said things about not wanting to have kids because he wouldn’t want them to have half of a heart. I think those questions are probably ruminating in a place in his brain, but I don’t think he thinks about them a lot.
I said to him not long ago, I saw someone with a social media account about living with HLHS. I sent it to Jake, I said, “What do you think of that?” And he was like, “I’m not living with hypoplastic left heart” And I said, “No? Then what are you?” And he said, “I’m just living.” I just thought it was such a great attitude, such a great response, like “I’m just living.”
– Diane, mother of Jake, age 21, HLHS
When you talk about genetic concerns, we worry about Jake going forward. He’s 21, he’s going to graduate college soon, he’s got a girlfriend, sooner or later he’s going to want to get married and that’s a conversation we had with Jake, “When you do get married, if you decide to have children, make the plan. You need to get genetic counseling, and just be smart about your decisions, because you don’t want history to repeat itself.” But I think he’s pretty smart that way.
– Bill, father of Jake, age 21, HLHS
My concerns for the future are him just taking the meds. Taking the meds and being somewhat physical. He’s just not doing that. And my husband and I think about what’s his life going to be like. We wonder, like, let’s just say he wants to be an adjustment counselor in school, or he wants to be a therapist—could he do that with maybe a master’s degree? Will they give him benefits? With his medical things, will he be denied coverage? I don’t know. We think about that a lot.
– Louisa, mother of Gabriel, age 20, HLHS
He’s been talking a lot about sports management. I mean he just loves sports, playing them, watching them, talking about them. I wouldn’t be the least bit surprised if he ended up doing something sports related. I mean he’s just so social and he’s so comfortable standing up and working a room. Even when he graduated from high school he had to stand up and talk for 15 minutes and there must have been 1500 people there, he was just ad-libbing the whole thing. He’s so comfortable in his own skin and very well-spoken and very thoughtful. So he has his own set of skills and how he uses them over time will be so much fun to watch how he develops his career and his potential.
– Richard, father of David, age 23, TOF