Alice: When one of us is sick, we’ve moved out, Wes and I. We go to a family member’s house. It was hard.
Allan: It was right before- both times, it was right before a cath.
Alice: Starting last summer, Zach was getting immunoglobulins—it’s like a blood transfusion but for his immune system. He gets infusions once a week, we do them at home, and that helps give him some protection. He has been vaccinated, but he doesn’t hold the vaccines because of his immune issues, so if he’s around someone who has the measles, even though he’s been vaccinated against it, he’s not necessarily going to be able to fight it off.
– Alice and Allan, parents of Zach, age 3, Single Ventricle
We have two other children so the 4-week hospital stay was a tricky thing. My sister took my other two kids for the first two weeks. My husband and I stayed at the hospital and we took turns every night sleeping in the ICU or the 8 East step down unit. With Carson, we never wanted him to be by himself, so we took turns doing that and the other parent stayed at the Yawkey House, which is fabulous. I was recovering from a C-section as well, so that was a little bit trickier. After two weeks, my husband came home during the week, Monday through Friday, so my sister could go back to work, he stayed with the kids and I stayed at the hospital. And then on the weekends he would come out Friday evening-ish and stay until Sunday night, and then that’s how we did it for the last two weeks. So the kids could be home with daddy during the week, and then they would go back to my sister’s on the weekend so that my husband could be in Boston with us, and I stayed in Boston the whole time.
– Amanda, Mother of Carson, age 5, Heterotaxy
I would say the first few years our family had been very supportive, quite a bit in the background, and with this last surgery it was a big push from everyone. If I had to compare it, I’d say the first few years you know you have the support, everybody’s there for you, whatever you need, but you still have that feeling like, Mom and Dad and children are going through this together. Whereas this time it was like there was a whole family going—they were right there, the phones never stopped ringing for eight hours, text messages, emails, then we had my wife’s parents were here with us the whole time. Soon as she came out of the ICU, I had I had an aunt and uncle who began to get here from Baltimore, and then as soon as she came out of the ICU, her older sister and my mom they were on a plane here, so at one point there was a great deal of support here, and that was helping.
– Nick, father of Jade, age 6, Dextrocardia
We could talk about it at home, with difficulty, but we had to because it was something that we were facing every minute of the day. It didn’t cause arguments, but it would cause some tension about what way to go, what to do, what was the best way to go forward, and we kind of came to—she’s out of the hospital now, the therapy she’s on now is working well for her, we have a great cardiologist that we love, we love the electrophysiology department, the schools are really acting the way they should be acting—our problem is how do we deal with it? We both decided that we can’t just wrap her up in cotton wool and not let her do anything.
– Jim, father of Chloe, age 13, CPVT
It’s just huge, I mean this is huge. It colors so much of our life. It also puts things in perspective, you know, we try not to be bothered by things that are smaller. But we’re always afraid for our kids’ health, that for me is everything.
– Amy, mother of Rebecca, age 19, ARVD
I don’t think there’s any way around when you have someone in the family who has a chronic disease, it definitely affects it. Our first child, she’s much more of a perfectionist and I think the middle child to a lesser extent. If you interviewed them and they were totally honest, I think they’d say that so much time was devoted to Gabriel—he was always on the radar. We dragged Gabriel everywhere. Both older kids were involved in sports, we went to all their games, we tried to be, for lack of a better word, as “normal” a family as we possibly could. As I became more familiar with living in Boston, we were in a cooperative nursery school, so we made tons of friends and that helped, and the other kids had play dates, but I think as time went on, and Gabriel was difficult, he was on medications for a while, he had anxiety, he tried a few different meds and there were a lot of negative behavioral impacts, and he was not easy for a while. And then he was diagnosed with ADD and he put on an Education plan. It was a lot of time devoted to Gabriel and Gabriel’s issues and, they weren’t all medical, because he was really pretty stable.
– Louisa, mother of Gabriel, age 20, HLHS
We got married at 25 and 24, had our kids in our late 20s. We hadn’t been married too long, we wanted a family, we had planned a family. We were kind of clueless that anything could go wrong, because the first pregnancy had been routine, and he came out a beautiful little boy, and no issues, Diane did a great job. When you’re 27 or 28 years old, you just think that’s the way it goes. You almost feel invincible. In that regard we were kind of blindsided, we went from having a beautiful two year old, my wife was five months pregnant, she looked terrific, to having a doctor say that our best option was to probably terminate the pregnancy, which is what we were told on that day initially by the doctor who diagnosed Jake. It was almost surreal, quite frankly. And when that day rolled around, my wife and I look at each other like, “This is that day.” Because we remember that day like we remember our anniversary, the kids’ birthdays or whatever, it’s a big day in the history of our family.
– Bill, father of Jake, age 21, HLHS