How it’s affected my child

I think it’s made her really compassionate to other people who have any problems or have to go to the doctor or the hospital. I think she understands in a different way.

 – Kate, mother of Alexandra, age 8, Pacemaker


Since his surgery, his development is definitely behind other kids, but he’s been developing. It was harder for him to keep up with kids, where other kids were out of their strollers at two or three years old. If we went for longer walks, we’re talking when he was five, six, even seven, we would still have to pop him in a stroller to walk around. He’s progressing in all areas, steadily, but he’s definitely behind.

 – Abigail, mother of Johnny, age 9, HLHS


She was really good about doing what she needed to do, she’s had a really strong front. She gets really irritable before the doctor’s appointments. She really likes her doctor a lot, she feels like he’s on her side, but it’s very frustrating for her to—she’d rather not deal. But she does, she takes very good care of herself, but she’d rather not think about it.

We didn’t get a therapist for her, which was a mistake. Even if your kid seems like they’re sailing through this and they haven’t hit a speed bump, get them a therapist. And my friends were recommending that to me and my husband and I kept saying, “She’s doing great, she’s Teflon, this is all bouncing off of her,” because we wanted to believe that, and she was doing great. Senior year, so maybe a year and a half after the first episode, I did get her a therapist, and she said to me, “We should have done this a long time ago, this is really helpful.” She doesn’t even have memory of being an athlete, she got rid of that, she didn’t look back, she just moved forward. So the therapist was helping her look at what she’s lost and she hadn’t even looked at it that way because she’s moving forward. It was very helpful for her to have a therapist, and then when she went to college, I knew she had to have one, so we went for orientation and set her up with a general practitioner and a therapist.

 – Amy, mother of Rebecca, age 19, ARVD


If you talked to Jake today, he would tell you all his plans. He has plans. He knows who he wants to work for, he knows what he wants to do, he’s got very strong likes and very strong dislikes, and he’s got very strong opinions. He in no way shape or form is thinking that he will live any less. Matter of fact, he’s probably making plans to do more than the rest of us. He’s just one of those guys, he’s become extremely charismatic, not just because he’s my son but he’s been talking to grownups since he was a tiny little baby. He very early on got used to having conversations with grownups, and we’re convinced that that kind of shaped his character. He’s always liked older people, he’s always liked having grownup conversations, even when he was little, and mainly I think because that’s the way he was raised, talking to doctors, quite frankly. As far as his plans, he’s aware that down the road there may be some blips, but he said to me, “You know what dad, I have half a heart, that stinks, but we’ll deal with it.” So that’s the way he looks at it.

 – Bill, father of Jake, age 21, HLHS