How it affects my relationship with my spouse

The last thing you want to hear is that there’s something wrong and that it’s really wrong, like critically wrong with your baby. It’s your worst nightmare but we dealt with it. I’m fortunate that I have a great marriage and that my husband and I were able to support each other. We were very much on the same page about how we wanted to move forward, there were no challenges with that. It was awful, it was hard, as you would expect it to be.

 – Amanda, Mother of Carson, age 5, Heterotaxy


We’re all different people, we all have different spouses. Some of us have spouses some of us don’t. I’d see situations where a young girl comes in and has a baby, and the guy is like, “I’m done.” You see that, and I know we’re lucky. We’ve been very much in sync with this whole thing. We’ve handled it well together. Probably we’re closer together. Is that what’s going to happen to everybody? I have no clue.

 – Scott, father of Austin, age 10, TOF


I must admit, it was very, very difficult for me and my wife. It was a huge challenge for us not to just tear each other apart. I’m a little bit of a control freak, I tend to talk too much, and there were times when she had to rein me in and say, “You know what Jim, it’s just not all about you. It’s not just what you want, it’s what I want as well.” And I had to step back and say to myself, “Yeah you know what, sometimes what I want or sometimes what my opinion is isn’t necessarily what everybody else wants.” But I had to be told that.

 – Jim, father of Chloe, age 13, CPVT


It’s hard, it’s a lonely thing to go through when your kid is sick. It’s something I struggle with, trying to figure out what this has done to our family. We do feel like everybody struggles—when I’m telling this story I’m like, “Wow, this is big, it feels bigger than the way I let it feel every day.” My husband tends to depression a little bit, it’s depressing. We changed our careers around it a little bit, he took his career back a step so that he could be home a lot more.

 – Amy, mother of Rebecca, age 19, ARVD


We were two incomes, we were professional people with plans to buy the house, the minivan, and all the baloney, with two kids. Diane and I talked and we made a commitment that she needed to be with Jake until he was well, so there was a time when she didn’t work, and it was years, and I worked a lot of hours. I worked in my job to make money, because I was the sole income. So for that period of time, it’s almost like you put your marriage on hold. You say, “Okay, the goal at the end of this is we’re going to watch Jake excel. He’s going to live and he’s going to beat the odds.” If for no other reason you have no choice, you’re committed to the child and it does affect your marriage. There was just a lot of stress financially, emotionally, physically, it was just hard. In that respect, the doctor who did the initial diagnosis and said, “You could end up divorced, you could end up broke, you could end up this that and the other,” while she was pretty brutal in her assessment, she was right in some respects. The upside of that is that it has now made us a stronger couple and we’re happy. We really truly believe that what’s happened with Jake is miraculous.

 – Bill, father of Jake, age 21, HLHS