He went to college to study culinary. He did that fall of his freshman year and it was too much. I guess we hadn’t really thought about it—it was a lot more lab time than his peers. I don’t think he had really thought about the fact that you have to learn all the basics and then you become Bobby Flay or whatever. So second semester he decided to switch, and he did general education, and he was thinking about teaching, possibly special education. Now he’s declared psychology, and I think a huge part is he has tremendous empathy. He loved little kids all during high school he worked in the church nursery and when we’re at Children’s, he’s very aware of other kids. Having been through what he’s been through, I think he’d like to support kids that way. So that’s where he is right now. He’s declared adolescent development and the last few summers he’s been a camp counselor and he’s got the same job again this summer so he’s continuing being with little kids.

I think his condition probably hangs over his head and affects his behavior and or actions more than we think. I don’t know how much he has told his friends. A couple of weeks ago at school, he actually drank too much, but long story short, a couple of his friends had to take him to the hospital because they were worried about how he was acting. He ended up being fine, they gave him IV fluids, and we drove up there because one of the kids called us from the hospital. We took him back to his dorm and thank God he was fine. I don’t know if he was just trying to be cool, but his friends didn’t know that he was on a bunch of meds. You don’t necessarily tell your roommates or your friends about all of your, for lack of a better word, “secrets,” so they were surprised, and now they’re aware. Hopefully, now at least those kids—if he’s ever at a party and he decides he’s going to have something, that they’re going to say, “you’re nuts,” or “don’t do that.”

I think part of that was that he just wanted to be one of the guys and he just wanted to be cool. I think he said it was vodka with Gatorade. So, that’s typical, nonsense behavior in any kid. So he wants to be normal and he can’t be normal because his medical condition doesn’t allow it.

 – Louisa, mother of Gabriel, age 20, HLHS


For college, distance was a big issue. We both very much wanted him to go away to college, we desperately wanted him to have that normal experience. But his senior year in high school was one of the sickest years he had had in many years. So it was very fresh in my mind that he was sick all the time. During senior year in high school within a three month period of time there was a sinus infection, and from that he developed more illnesses from the antibiotics, which was an intestinal infection. So that was unusual, and then he got shingles and pneumonia that landed him in the hospital, all within three months. He was a mess, he lost a lot of weight, he was just not right. That was the point at which I really made a lot of noise and said, “Someone needs to look at his immune system because something’s not right.” And they agreed at that point and did it.

All of that was very fresh in my mind at that time, so I was scared to death on two levels. One, if he’s far away and he’s sick, that’s just not going to work, he needs to be near me. And two, all the other typical worries about you’ve got a kid who’s medically complex and he’s going to go off and be a teenager and how’s that going to work?

We gave him a one hour radius—he needed to be no more than an hour from home. Which, living where we live, sounds great because there are so many colleges. I think the school he chose has been a tremendous fit for him and it’s 40 minutes from home. So he’s away, and he doesn’t come home on weekends, and he’s really getting that experience. But we have the comfort of knowing that if I need to get him, I can be there fast. That’s been a huge gift. I hear about families that send their hypoplasts far away from home—maybe if Jake hadn’t been so chronically sick it would have been different, but at the time there was just no way that was an option.

 – Diane, mother of Jake, age 21, HLHS


He’s figured out he needs to ask for help. Those special plans, even at college, are in effect and he does have some tutors and does some extra work. We watch a little more closely, we’re trying not to be helicopter parents, but how can you not be. On two fronts, you’re paying for it and you want the best for your young adult child. But he struggled. It’s very funny with Jake. He went through a period in high school when he wouldn’t take his shirt off if the kids went to the beach because he had some pretty impressive scarring. He wouldn’t talk about having chronic health issues, or half of a heart. Frankly, he didn’t feel well a lot of the time, he was on steroids a lot which I think affected his mood, so he was kind of puffed up a lot. I don’t think he was happy with his appearance and of course when you’re in high school, that’s what you’re going for, you want to meet girls and look good and act cool. He couldn’t play any sports, although he managed teams. He ended up playing on the golf team, which was a great experience for him. He had very few friends that he could call close in high school, to the point where we were concerned.

That has changed completely. He went off to college, he’s like “Joe Cool” on campus now, and not just because he’s my kid, but because everybody loves him. You walk across campus and- my father-in-law says it’s like walking around with the Pope. Everybody knows him, everybody loves him, all the upperclassmen when he was a freshman loved him. He managed some sports teams and he works there. He’s off the steroids, he dropped a ton of weight, he looks fantastic, he’s a handsome kid, and he has a tremendous sense of humor which is serving him well. So he’s kind of come into his own, socially.

 – Bill, father of Jake, age 21, HLHS


I took him in for a doctor’s visit, it was senior year in high school or freshman year in college, and at the end of the appointment I said to the doctor and Jake, “Jake’s drinking. Jake, your doctor now knows that you’re drinking. I’m going to step out, and I want you guys to talk about it.” And they did, they were in there for probably 15-20 minutes, and it scared him. He came out and he said something like, “You didn’t tell me my liver was compromised because of my heart.” Like, how did he not know that? But he didn’t. I was like, “Of course it’s compromised!” So it was a good conversation, but if I hadn’t initiated that, they wouldn’t have had that conversation. You get this kid, and you go through terrible stuff, and then you send them out into the world and you hope that they take care of themselves, but I can’t guarantee that. And that’s the stage we’re at. It’s scary, it’s a really scary thing.

My understanding is that he’ll stay at Children’s forever. There’s an adult cardiology clinic so he’ll forever be treated at Children’s hospital and there are a lot of adults who are. But he’s never been seen in the adult cardiology clinic. I don’t know when that transition happens. But I also mean with transitions like, the drinking conversation, sex conversations. I suspect a lot more of that is happening with the girls that it is with the boys. There’s probably conversations happening around birth control and things like that, and being careful about pregnancy because that carries a whole lot of other issues with it. I think there are a whole lot of things you wonder about with a kid with half of a heart and all the teenage things that they do, and the adult things that they do, that I don’t think he’s getting much guidance around. You won’t hear that from the younger families because they don’t want to think about their little kids having sex, but they will!

But his cardiologist is fabulous. If I say to her, which I probably will at the next visit, “Hey, I feel like we’re on the cusp right now, he’s 21, he’s an adult physically, he’s not an adult emotionally—close but not there yet.” But I don’t know when she’ll transition him. My point is just to start having those adult conversations with him. The other big, really big, horrible, important, scary thing is primary care. Because once your pediatrician kicks you out of their practice, which will happen eventually, primary care doctors dealing with these young adults with half of a heart is a scary thing. Because primary care is just not going to give them the attention that the pediatrician gives them. So that’s another big issue.

 – Diane, mother of Jake, age 21, HLHS


Freshman year, it was co-ed bathrooms, he was in the bathroom and he had a towel wrapped around his waist, a girl came in and looked at him and she said, “Oh my God! I have the exact same scar!” And she had had some type of open heart surgery. He’s not playing squash like he used to, and I don’t think he can keep up with- he’s very friendly with some of the squash players, he plays them on the side to stay in shape, but there’s no way he could compete with them physically at this point I don’t think. He’s tall and he’s thin, and he looks like he’s in great shape, but he’s not in that great of a shape. He should probably—and hopefully he will as he gets older—do more standardized exercise, every day do this, every day do that, but right now he’s in college and he’s just living the life of the college boy. He was very sick freshman year. He ended up with mono within a month and lost 15 pounds. He couldn’t shake it and that really set him back. But he wouldn’t come home. Now with David we’re dealing with transition care. What they’re telling us is there’s doctors who will care for him as he ages through the Children’s hospital system. But it’s a little awkward when everything’s miniature size.

 – Courtney, mother of David, age 23, TOF