What I know now

I know a lot of things that I probably shouldn’t. I mean, this was an entire facet of the world that I didn’t even know existed two and a half years ago or however long it is now. Nobody ever wants to know about pediatric cardiac defects—you don’t ever want to know about that. So I know more now than I probably should about my daughter’s defect and about other defects. I read—there aren’t that many books out there, but I read as many as I could. I know what a stellar institution Children’s Hospital is, and I know how amazing those doctors are and how they saved my daughter’s life. So, I know that.

 – Leslie, mother of Margaret, age 2, VSD


If I had worried myself from the get-go that all of the things that happened in the first two weeks were going to happen, I don’t know that that would have been the best thing for my pregnancy. It was better probably to just go through that one at a time. The Yawkey was so accommodating, because they were making ways for us to extend our stay, week after week. Knowing that that was taken care of, knowing that the insurance stuff was all good was a relief.

Actually, knowing about the insurance beforehand would have been good because at one point, we were getting all these bills and not realizing that they’re not final bills, they’re just the initial. We didn’t really understanding the whole insurance world at that point. I had previously checked our network and saw that all the doctors in Boston were in our network and it was all going to be good, and I guess I had forgotten that I had talked to them. Then we started getting what my husband initially thought were bills—I guess he should know better—but we’ve never been through something like this, so we didn’t know what to look for or expect. It was like $20,000 here, and then the next week it would be $15,000, and the next week $80,000 and we were like, “What is going on?” His bills they sent us were almost two million dollars, but it turned out our insurance covered almost everything. But that was stressful. We were about to sell everything. But that, much like everything else, ends up working out. In the long run, it does.

 – Lindsay, mother of Brian, age 2, Heterotaxy


When I talk with other HLHS families, I think the first thing they always say is that they are utterly blown away that Jake is 20 years old, and they are thrilled that he’s 20 years old. They don’t hear about a lot of 20 year olds who are doing well, because there aren’t that many of them. There’s always questions like, “Will they be able to play sports?” That’s a big one, I get that a lot. So I now know that that wasn’t just an angst for me, it’s a common thing when you have a boy I think in particular, you hope they can play sports. I get asked a lot about, “How did you deal with the school schedules and academics?” It’s hard though, I think that when you’re 20 years out, you have the benefit of a lot of years of experience so I have to be careful, and I’m conscious of this, that I don’t want to sound like I know better, because I didn’t do better than any of these families have done, but I certainly feel like I have this benefit of perspective that they don’t have because they’re in the midst of it.

I think I don’t have to say a whole lot, it’s just sort of telling people, I’m here, I’m with you, I’m supporting you, I’m praying for you. And I think it’s been really helpful, and that they take a lot of comfort in knowing Jake’s story. And I’ve gotten close to a few of them, I’m on the board of this organization called Sisters by Heart, which is all focused on support for HLHS families and I’ve gotten close to those ladies who are on the board. And there’s been a couple of families who are involved in surgeries who are from out of town and I’ve offered to go visit them and I have. But I would say it’s less about people asking for advice and more people just looking for support. I suspect that as their kids get older, and they start dealing with more of the social, emotional, school, educational stuff, they will have questions. I think that’s the much less chartered path. I think that the medical stuff- it’s not that it’s clear cut, but I think that you just have to get through it. There’s no advice anyone can give you to make the medical stuff easier. It is what it is. Your kid is going to have three open heart surgeries, it’s going to suck. There’s no way around that. But it’s more black and white, like the surgeons and the cardiologists say, “This is what your child needs.” Sometimes you have to make hard decisions, but most of the time it’s a pretty clear path and the doctors are charting the course, medically. And you’re advocating and you’re engaged.

But when it comes to the school, academic, social, emotional stuff, that is not black and white at all. You’re driving that bus with no one leading you. So I suspect that as a lot of these kids get older-one of my friends is already asking me questions like that, “I’m thinking I should maybe get my daughter to see a psychiatrist or psychologist what do you think?” And I said I think that’s really smart. So some of that kind of conversation is starting, but I think those are more with families who are beyond the third surgery and are now starting to think about some of that other stuff that’s so important.

 – Diane, mother of Jake, age 21, HLHS