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

When she was born and she had her first surgery and I remember through every surgery always thinking like, “There’s somebody somewhere that’s doing a study, or there’s somebody who’s making a change and we don’t even know about it yet, and what Isabelle has now, there may be so many other options years from now that somebody’s trying to develop.” Maybe because I’m a nurse and I believe in science and I still believe ten years from now they may be able to do something differently. But I don’t know if when she was first diagnosed I could have even thought like that. So when they were preparing to fix her heart with the pericardium, I just thought that that was the best treatment option then. Or when they said things were great with the bovine valve and I thought, “Oh, that’s great, but it didn’t quite work for Isabelle.” Then they did the Ross procedure, and that was super scary to me because now if she has problems, she has problems with two valves and not just one anymore, but that was the best option for right now. I think in the moment of each surgery, I did trust completely, blindly, that what they’re going to do is right that is what is best available and what is proven to work best and will be good for her.

I think you’re only as strong as you have to be, because I have to be for Isabelle and I would never let her see me become emotional. I’m very matter-of-fact around her about just living for right now and not thinking too far ahead. I felt like for a long time I kept thinking, “Oh no, what if her next appointment isn’t good?” And that was all consuming to me, it was very life consuming, it was really hard. Once I tried to stop doing that, and we’d come home from an appointment and good or bad or whatever—thankfully it’s been good—but I’m only living in right now with her and not looking too far ahead because looking too far ahead is just scary. It’s the unknown, and if you think about all the “What ifs” or what could happen, I think it makes it really hard to be happy right now. And Isabelle is happy and healthy and that’s what’s most important. So it’s hard to not always think ahead, plan ahead, and wonder what is next, but if you can do that—I think it has made a difference for us anyway in not feeling so nervous all the time.

 – Erica, mother of Isabelle, age 5, Anomalous Aortic Valve

 

Donna: If I could’ve known that she was going to be okay, then it would have made going through all of that okay. But at the time, we just don’t know how she’s going to come out the other side, it was always scary.

Nathan: The unexpected is the worst part. Not knowing.

Donna: Yeah, not knowing. And it’s such a complex defect. We’ve met a handful of people with the same diagnosis and everybody has had their own experiences and that makes this diagnosis even scarier. It’s just such a complex one with so many different possible outcomes.

 – Donna and Nathan, Mother and Father to Leah, age 10, HLHS

 

It’s hard—finding a way to take your fear about your child’s health and their future and acknowledge it, but put it in a place where you don’t dwell on it every day. That’s hard to do, and I think it’s harder to do when you’re in the midst of surgeries, it’s impossible before you finish that third surgery to do that. But that’s a challenge, and I’ve worked at that. I’ve worked really hard at it. As much as I don’t want Jake’s heart to define him, I don’t want his heart to define me either. I’m a heart mom, and I would call myself a heart mom, and I do a whole lot of advocacy for the heart association, and for Sisters by Heart, and I’m a big advocate for congenital heart disease awareness and policy change, but I don’t want that to be my definition. I don’t want to stick in that fear every single day. I have to go there sometimes, sometimes I have to, and it creeps up on you, but I try to sort of give it a place in my brain and in my heart where it’s there, and I’m aware of it, but I’m not visiting it every day.

 – Diane, mother of Jake, age 21, HLHS

Nick: Keep the faith, whatever it is that you do.

Shana: Not everybody’s religious, but we just do a lot of praying. That’s what you can do, just keep the faith and believe.

 – Nick and Shana, parents of Jade, age 6, Dextrocardia

 

I just prayed—we’re not overly religious people—but I found myself in church praying a lot. I did talk to somebody, one of the psychiatrists at Children’s, between the first two surgeries. To this day, we can be walking back through those hospital doors for a simple procedure, and it hits you all back like a ton of bricks. It doesn’t go away. I think that the friendships that have been created with other heart moms, other moms that are going through similar situations with their cardiac kids, has been an awful lot of help.

 – Grace, mother of Austin, age 10, TOF

 

I have not done service there, but I will say this, one of our pastors was able to see Alexandra in the ICU because they allow pastors to come in, but they don’t let other people come. That was really nice when right at the very beginning they came and visited and he sat with my husband and kind of just prayed for her before she had her surgery. I thought that was a really nice thing that Children’s would let happen. So from the very beginning, we prayed with one of our pastors and that’s when we found Alexandra’s doctor—they happened at the same time, which I thought was amazing. For us, our church has come alongside, and prayed with us, and taken our kids, and they’ve done meals for us, especially when we were in the hospital for this pneumonia.

I think medicine’s very important, but just realizing there’s also something bigger, and somebody’s taking care of Alexandra, that’s been really helpful for us. I love this story in the Old Testament, they used to put these things called “Stones of remembrance,” and so at the parting of the Red Sea, when they went through the Red Sea, and how God provided, they put stones of remembrance, and so every time we go in and Alexandra has x-rays, you see all these scars on her body, and I think of those as her stones of remembrance, of how God has preserved her life. It’s interesting because God always says that you need a new heart, and Alexandra has a new heart. So I think there’s all these great tangible things about our faith that come through with the story, and that we’ve been able to tell our children.

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker

I did so much research on the condition and you know for the past 16 or 17 years, I’ve spoken with a cardiologist and spoken to her genetics class as the mother of a patient. The cardiologist teaches the genetics side and I come in and talk about the patient side, so I’ve really immersed myself in learning about the condition and now work with it myself.

 – Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker

 

I’m very thankful every single day that we have the best cardiologist, Dr. Geggel, and he takes time to ask her how she is and every time we’ve been in the hospital they don’t just talk to us, they talk to Isabelle too. And that’s made a huge difference in her not being afraid and wanting to come, skipping right through Children’s door, and I am truly thankful for everybody. So anytime I have an opportunity to say thank you, I always do.

I tried to get the kids involved in wanting to give back to the hospital. To do that we built this lemonade stand—my husband built it and the kids helped to paint it and every spring we set it up at different things to raise money for the hospital, and that has kind of become a big thing for us too. If you ask the kids—they’ll earn money and they’ll be like, “Mom, this is for the hospital.” So it’s not just me that’s thankful too. I think that my kids get it and they always want to try to help too. If you ask Isabelle, “why does she want to help Children’s when she puts money in our jar,” she’ll say, “It’s so everybody gets to go home, mom.” So I know that every child there is just like Isabelle, they just want to go home. I think we’re really lucky.

 – Erica, mother of Isabelle, age 5, Anomalous Aortic Valve

 

We did talk at her school, we had AEDs put in all the schools in the town we live in, and one of the AEDs we had put into the hockey rink actually saved a life not long afterwards. I made a point of her knowing, “Because we did that, Chloe, that—it was a grandfather—man’s life was saved. We don’t know, he might have been saved anyway, but because we had that AED placed there, it was there for them to use immediately and his life was saved. So that’s why we do what we do.” And she was like, “Yeah.”

 – Jim, father of Chloe, age 13, CPVT

 

For me, I can’t imagine not doing the advocacy. I do policy advocacy for work, it’s who I am, but I didn’t do that before Jake was born. And it’s sort of interesting. I think I learned everything I needed to know about being an advocate from being Jake’s mom, but I think that all of the things I do at work are also very helpful, because I can now see things from a policy  perspective. I couldn’t imagine not giving back and contributing in some way.

I feel like Jake’s life is a miraculous gift and it’s my job to try to help and make the path easier for other people. I feel very much that that’s an obligation that I have. And it feels like a gift to be able to be that and make something positive and good come of it. If someone can learn from what I screwed up, that’s just awesome. And if I could help with policies that are going to make things easier for families, or raising money for Sisters by Heart, if I can do that and help them offer support to all of these families, how could I not do that?

 – Diane, mother of Jake, age 21, HLHS