How I got through

One thing that helped me was a funny e-mail I got from someone saying, “This will just be a part of the rich history of a little girl. And it will just make her stronger and more self-confident, and more kids now-a-days could use that.” I think it was the first moment that I felt like something positive could come out of this, and it was sort of awakening to me in that way. Sort of recalibrating and thinking “Oh yeah, this is going to be big. This is-you know, she’s going to have done this at age two. We’re going to remind her, she may not remember it, but we’re going to shape this memory for her and we’re going to make sure she understands that she can do anything.  She’s going to have done more in the first two years than some do in a lifetime. And we’re going to make sure this contributes to her sense of self and her confidence and her life going forward.”

 – Jessica, mother of Avery, age 2, ASD


I mean I think my husband and I were mostly okay by ourselves. The hospital is so generous with all of their practitioners, all of the nurses, all of the doctors, everybody there is so wonderful that they sort of provide a really big support team to you before you even walk out the door, and then obviously our families, but on some level, you know, nobody- with the exception of other parents going through the same thing- really understands what it is and what’s happening and you know, you can explain the procedure to somebody 25 times, and I think they’re still not going to understand it. It’s such a different world, that you sort of insulate, like, we just stopped wanting to explain things to people. We were kind of like, “we’ll tell you when she’s okay, and we’ll tell you if she’s not” and we kept things very basic with people, but I mean, we were tight. We didn’t really need too much support beyond one another, and the hospital, and our families.

 – Leslie, mother of Margaret, age 2, VSD


Honestly, everyone is different, but I learned a lot about faith and just the power of prayer. It wasn’t me going to my church, and it wasn’t me listening to a minister, it was literally sitting in the dark, in the dead of night being like “My baby’s not breathing, and I can pray, that’s the only thing I can do right now.” I read an article where someone said they hate it when people say “God doesn’t give you more than you can handle” because He does. He gives you more than you can handle so you get on your knees and pray. So for me, I really do think that it’s a huge test of my faith, and that was a way that I could cope—was knowing that God had a plan for our family and He has a plan for Elizabeth.

And also like, the partner at my law firm who I worked for, one day on the phone he said “Anna, there are always blue skies ahead. Right now, everything’s so dark and so bleak, but you have to look for the blue skies. There are always some blue skies ahead.” And it’s so funny because he probably didn’t even remember saying that to me but I like, hung on to that for dear life. “There will be blue skies, there will be blue skies.”

 – Anna, mother of Elizabeth, age 2, VSD


Alice: To be honest, the thing that’s helped me the most with coping is therapy. It took probably two years- it wasn’t until about a year and a half ago that I started seeing a therapist just one-on-one, and she taught me a lot of strategies. You’re used to your personality for 30 years, and then you have something like this happen and sometimes you have to adjust who you are to be able to deal with it. And then the therapist that I was seeing was so inspired that she started a support group for other moms in our area, so her and I have kind of been working on that, now there are like eight moms who meet every two weeks, so that’s been really helpful too. Allan, do you have any other things that have helped you cope?

Allan: Going to therapy has definitely helped, my wife and I see different therapists. I was a very active runner before they were born, and I stopped recently after trying to get back into exercising. But trying to remember that you still have to take care of yourself as well, health-wise. It’s a stress reliever to go out and run.

 – Alice and Allan, parents of Zach, age 3, Single Ventricle


Unfortunately, there is not a lot of support for families that I’ve found. At the very beginning even before she was born, I did internet search after internet search to try and find a support group, or to be able to connect with somebody who could answer questions, like “What was it like for you?” Trying to find another parent with a child who had similar diagnoses. My husband and I talk endlessly about it and we’re the best support for each other because we’re living it. My family, my mother, my sister, my brother, my dad. Friends, they’re a good support, they’re a different kind of support from my husband. I wish there was more support for parents. The hospital was great and asked if we needed anything, offering support for her, but it’s not the same as being able to talk to another parent who’s been down the road before you to say, “this is what we experienced.” I mean, even just little things prior to the first surgery, like what to bring, what worked for them in terms of living at your child’s bedside for seven days. Simple, little things like that all the way up to how to sit and survive in the ICU while you’re waiting, while your child’s in surgery, that sort of thing. My goal one day is to kind of develop something that would be a great avenue of support for parents.

In terms of myself, there’s been a lot of tears trying to get through it and step back and think about what she’s been through, what lies ahead. Feeling proud of what we’ve gone through, it amazes me the strength that I’ve had. Because, although my husband is great, he’s great with her, he’s a great support to me, I think I’ve taken on the sole responsibility and the sole advocate for her to know every part of her medical diagnoses, to know every single part of her medical history and where she’s been. And it’s a lot of information to always have and to always be able to rattle off. There’s no one outlet that I utilize to decompress sometimes. It’s tough, I think in a perfect world, to talk with another mother who’s been down that road would be probably the best support. My husband can give me a great amount of support, but it’s different as a mother what you go through. Because you go through all of those emotions and you carried that child and the guilt thinking that you had done something, trying to figure out why.

 – Roxanne, mother of Amelia, age 7, Dextrocardia


I mean my major concern has been, “what if they’re right? Are we doing the right thing with her care plan, is that what we should be doing?” And I’ll be honest, I’m not sure. Since she had the sympathectomy and afterwards her QT was actually much longer than it was pre-surgery, and no one has been able to provide any reason. I want some kind of reason why that would happen, and there’s really no information about whether that has actually worsened her prognosis. My husband, he’s a physician, and when she was in the hospital last summer and we were trying to decide about whether to do the sympathectomy, we spoke with Electrophysiology staff and also did our own literature search in med papers about it. I guess trying to get data has been a way to deal with the uncertainty and the anxiety, but on some level, there’s not a ton of information that is available about the condition and so that resource is somewhat limited.

 – Catharine, mother of Willow, age 8, Long QT Syndrome


Donna: It’s been very helpful because we can actually understand the condition and when things are going wrong we can kind of understand what’s probably happening and why this is taking place. It can be hard for me—I work in surgery, so if people come with a broken bone, we fix it. If they have colitis, we take care of it. I think that’s been the hardest part for me, with this defect being so complex, not being able to just fix it, because I’m in the business of fixing people. So that’s been a harder thing for me, just accepting that this is a lifelong thing and that things will continue to come up, and that it will never ever be just fixed.

Nathan: I would say having a medical background has been comforting just so I can understand everything, because I’m the kind of person that wants to understand everything. And even at some point when the doctors were at a loss, they would ask us what we thought because we were with her, we knew her more, we’re her parents and they would rely on some of our suggestions to help them make more informed decisions and we could relay more health-based facts because of that background.

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


For me, when Austin was two I had a conversation with Dr. Meyer, asking “How many more surgeries does he need?” and he started telling me about the tissue engineered heart valve that they’re working on in a research lab. I said, “Well, when’s that going to be ready?” and he’s just saying, “It takes time because of the funding.” I said to my husband, “I want to raise money for research that could help Austin, it could avoid more surgeries.” I think for me, that’s been therapeutic because as a parent, it’s just a very helpless feeling when your child’s in the hospital and you can’t do anything. It’s in the hands of the doctors and the nurses. Too many times I’ve held him down while they’ve tried to put IVs in him, he’s screamed and cried and begged me to make it stop. I guess that helps me too, to feel like I’m trying to do something to make a difference.

 – Grace, mother of Austin, age 10, TOF


I don’t know that I do cope is the honest answer. It’s never out of my mind, as I said, I’ve carried this ICD in my pocket for the last seven years—I don’t take it out of my pocket. Someone asked me, “Why do you carry it?” I had no answer for it, because I don’t know why I carry it. I just said, “Oh well it’s a connection between us.” That’s just what came out. I have no idea why I do that, but I do it, and it’s like my security blanket almost. You try to cope with one thing at a time.

My wife, it was awful awful awful for her, but her coping was different. She’s not able to stand up and talk about it. She’s like, “I cannot do it, I cannot speak about what happened to my child to people. I know that they only mean well and I know it probably would be better if I could, because it might help other people, but I just can’t do it, I’m being selfish.” So she said, “The only way I can sort of give back is-” she’s on a board at the rehab hospital helping the inpatients, giving advice to new families when they come to the hospital, what they should expect, advising the hospital on what should be left out, though mainly on communication, because that was a big thing when you go from a hospital-hospital to a rehab-hospital, it’s a halfway house almost. A lot of it you’re left on your own, because that’s the point of it, it’s a step to get you home. And it’s a big step for people, and they go in and they don’t know what to expect, so that’s how she helps out.

Myself and Chloe, we like to go give talks in schools. We’ve run CPR classes, mass CPR classes, getting multiple people trained at the same time. We do fundraising events, we do anything- we work a lot alongside the American Heart Association. We’re part of what’s called the Youth Advisory Board, so we’re contacting schools, going to schools, finding out what youth organizations and schools need. A big part for me was my daughter’s small little school had an emergency medical response plan in place, had staff trained in CPR—none of this I was aware of, or none of this prior to this event had I ever thought to ask, because why would you? Your six year old child’s not going to have a cardiac arrest at school. But they had this medical emergency plan in place, now they have AEDs in place also, they didn’t have AEDs. We go around getting AEDs in places like schools, sporting facilities, giving talks.

Just very recently, in fact, I spoke to the neuropsychologist at Children’s Hospital, myself and Chloe went, Dr. Ware. I spoke to her and Chloe spoke to her separately, and I said to Dr. Ware, “I want you to ask Chloe whether she wants to continue doing things with the American Heart Association. Whether she feels comfortable going and talking, whether she wants to step away from that, and maybe pick it up another time. Is she doing it to make me happy, or is she doing it because she wants to do it?” So Dr. Ware asked her that question and Chloe said she wants to do it, which is good. It makes me feel better. Because sometimes as a parent you think, “I don’t want to be forcing her to do things she doesn’t want to do just because I think it’s the right thing to do.”

 – Jim, father of Chloe, age 13, CPVT


Talking a lot with the doctors, getting the information, searching it and finding other people who had been through this, that is sort of what I started with. You would think there would be a lot more information out there that is accessible—and there is—it is just hard to find. Just understanding what was going to happen. Talking to other families and my brother’s best friend from high school who is starting his practice as a pediatric cardiologist, so I used him quite a bit. He was very helpful, assuring we were doing the right thing. We looked at some of the data. Children’s was very open in sharing the information. I said, “I have this friend who is a cardiologist and I want him to see it.” So we talked about it with him.

I started creating my blog just to write down what was going on during visits, just to keep my parents and family and whoever else up to date. It kind of helped me, each time we had a visit, or time to go, I would update that. That helps get some of the feelings out of what you are thinking. That was helpful to me. Just talking to friends and family about it. We knew the course of action was right, there are times you have to, for lack of better words, “man up” and deal with it. There are certain times in life where you have to deal with some really hard stuff and if you can’t do that then your child is not going to be able to. When it is all done you can exhale a little bit. You are on guard, ready to attack kind of mode.

 – Paul, father of Sierra, age 13, Anomalous Aortic Valve


It’s hard. It’s hard for her to be away at college, although there’s a relief in a lot of ways in that she’s doing well, that’s always great, and when she’s not doing well it’s really, really hard. I just kind of barrel through with work, and I’ve got another kid at home. It’s definitely been hard, but we also really cherish time together as a family, or I try to, my husband too. For me, I exercise a lot, I rely on my friends and I have networks. I have my high school friends, my college friends, my friends here, my friends from when I lived in New York, and I rely on my friends a lot.

I would say reach out to your support system. Reach out to whoever is supportive. Stay away from unsupportive, stay away from people who give way too much advice or contradict what you feel is the right thing to do, because that just causes a lot of stress. Take anti-anxiety, anti-depression medication if you need it. Take care of yourself to get through it. Do what you need to do to get through, and be kind to yourself because it’s really hard. I know for me I did get a prescription for anti-anxiety medication and I was too afraid to take it because I was afraid if I took it I wouldn’t be sharp, and I needed to be sharp, but being sharp really just meant being on edge at all times. When I let myself take it, I was better. For me it’s talking to people, for my husband it drives him nuts that I talk to so many people. I think it would help him if he had more people to talk to.

 – Amy, mother of Rebecca, age 19, ARVD


I’m a runner, and I’m a little bit of a gym rat, so once we got back, my routine resumed fairly quickly. He was home schooled for 6 weeks. He had two teachers who came to the house three days a week and worked on assignments with him, so except for having to give him meds, and work with him on just making sure that he was taking the meds, things got back to “normal,” for lack of a better word, fairly quickly. And then he went back to school for May and June.

 – Louisa, mother of Gabriel, age 20, HLHS


Melanie: James used me because other than the day he went to the ICU, I think I was fairly calm, and I was very confident that things were going to go well. I knew he was in the best hands—you can’t do any more than that for your kid. So I think we handled it pretty well. The only time I really had a hard time was when they were trying to get the IV in him and he was sobbing, and my kid doesn’t do that, and so I knew he was so stressed with what was going on. I stepped around the bed where Dr. Newburger was sitting talking to Walt and lost it, and Dr. Newburger kind of looked at me because she’d never seen this in me, and I just lost it. And then all of a sudden I hear, “Okay, ultrasound’s here, we’re going to try again.” I looked back to James and my face and his face going, “Okay, you’re going to breathe through this and they’re going to get this in. You’re going to be okay, we’re going to get this in” and it’s like you flip a switch.

Walter: Yeah, they weren’t trying to stick in a normal size needle, it was big one.

Melanie: It was a big IV in case he crashed. I stayed with him the entire time even though he was 17 years old. Walt would go back to the Yawkey House and I did go out a couple of times, but I stayed with him. I remember saying to him one night, “Are you okay that I’m staying? Because I need to stay” and he goes “I know Mom, it’s okay.” But I think he was also confident because he knew I knew what to look for.

Walter: Yeah, Mom’s the medical professional. She’s knows what to look for.

Melanie: But I was not prepared for the total emotional letdown when I got home. I thought I was going back to work the following week. I could not go back to work that soon. I was just a basket case. I was exhausted, I was emotionally—crying at anything, and I kept saying “Why am I doing this now? We’re through the-” and everybody goes “Yeah, but who was strong all that time?” I was not prepared for that, I remember telling the another mom, “You’re going to be strong during this for your kid, but afterwards, you’re going to crash” and she said, “I wouldn’t have been ready for it either Mel, had you not said that.” Because you’re not, you think it’s over, you’re through the worst part, but…

Walter: It’s so important. The advice doesn’t even have to do with the operation itself, it’s the, “Go in there, you’re going to find this, there’s going to be tubes all over, whatever, body’s going to be cold afterwards, you’re going to go into prep, you’re going to get put out of prep, then you’re going to get taken down to this other area and a nurse is- every so often is going to let you know what stage the operation’s on, and then the doctor will come in-” just knowing that, stuff for a lot of people is important.

 – Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery

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

How we cope with the past

It’s been so many years and I still—it’s not hard to talk about, but it is hard to talk about. I don’t know—how come I can go to work and do my job, but I hear someone on a ventilator and I see Isabelle’s face? It clearly was stressful, but it didn’t seem overwhelming to me when we were there, I just felt like, “Alright, we can get through this, we can totally get through this” and my sole focus was Isabelle only and not all the medical things around her, but just like “Isabelle, look at me, we can do this.” We have always been a team. Clearly things affect you and you don’t even know it…until you know it.

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


Very, very unfortunately, there was a little girl at Chloe’s school last year that had a cardiac arrest—same age as Chloe—and she passed away. That was a big thing for Chloe. It was difficult for everybody. It was difficult for Chloe because it made her face the fact of how lucky she was. Rather than just numbers, they say it’s a three percent survival rate, a five percent survival rate—it’s just numbers. But for it to actually happen to a friend of hers, and her friend not survive, it made her realize how lucky she was. We call it lucky, but it wasn’t lucky, it was that all the pieces were in place. She was in the right place at the right time. Her school knew what to do, and they had staff qualified to perform CPR. When she was taken to the hospital, they knew what to do. So we say, “You’re lucky,” but it’s not lucky. Luck has nothing to do with it.

 – Jim, father of Chloe, age 13, CPVT


It’s a blur even to try and remember what it was like. I actually did lose some memory- I lost a couple months, I just don’t have any memory of times. I lost it when I was first diagnosed, which I thought was the electricity because I had been zapped, so I thought maybe that was it, but then with Rebecca I realized it’s just trauma, because I lost a bunch of months that I can’t remember. I tell the same story over and over again, it’s like having a baby where you just don’t have anything left except your one focus. So people just have to be easy on themselves.

 – Amy, mother of Rebecca, age 19, ARVD


Coping with a family history of heart conditions

The day they gave us Avery’s diagnosis of SVT, they were telling us what it, here’s what to look for, here’s what it feels like to them. All of a sudden I said, “Is this genetic?” and he said “No, it’s not genetic.” I said, “Because some of these symptoms sound very familiar to me.” And he said, “You should ask your doctor.” And so because of Avery’s diagnosis, I talked to my doctor about a month later, they put a Holter on me, and I have SVT. And I’m going to have a heart procedure. And because of Avery, I found this.

For me, something that was my normal, I thought it was anxiety. On the really bad ones I’m like “Oh my god, what’s happening to me?” But I never really knew to advocate for myself in that way. In a way, Avery gave me the strength to do that for myself, and to speak up to my doctor and say “I don’t think this is normal.” It’s cool to me that we’re doing this together. I had to wear a Holter for a long time, for about a month, and Avery was very concerned about it, she was very concerned about the wires. She had a real fear of the wires, of any wire after her hospital stay. After a month she got used to it and she was more concentrating on the different colors and it became normal.

Then a couple of weeks ago, she had to wear one and I reminded her of when I had to wear one, and she was fine with it. I said, “Just like Mama goes to the heart doctor and you go to your heart doctor to keep us strong and we’re going to do this together.” I think people were looking to me to say, “Oh my God, how are you handling this, you guys had such a tough year,” but to me it was comforting to know what she was feeling. That was my first reaction, of “Oh! This is what she has? Okay. I’ve lived for 34 years with this, she’s not going to die from it.” And it’s a really hard thing to explain to someone how it feels, so I’m happy I know, so she can feel understood in that way. So, we’re in this together in a lot of ways. That’s pretty special.

 – Jessica, mother of Avery, age 2, ASD


Willow’s the youngest, then I have a daughter who’s 11 who has a normal EKG, and then my son who’s 13 who has the abnormal EKG. Only Willow has actually had the genetic testing done, but my son has a slightly abnormal EKG, and so he has been treated as a presumptive genetic positive. While she was in the hospital they did EKGs on my other kids, they were tested after she was born.

 – Catharine, mother of Willow, age 8, Long QT Syndrome


I was born with coarctation of aorta, and they didn’t discover it until I was seven years old. I’m not quite sure how that got missed by the pediatrician, but it did. So I had open heart surgery when I was eight years old, and I remember all of that. When we got pregnant with Leah, I knew they were following us closely because I had a heart defect, but I wasn’t concerned about it, because I lived a very normal, active life, I had the one open heart surgery and no issues after that, so I just kind of had it in mind that I was fixed, there was nothing to worry about. But I’ve since learned that I do have to worry about myself and keep tabs on my heart, especially as I’m getting older.

In the beginning for me there was a lot of guilt because I felt like Leah’s defect was because of me. And it’s a ridiculous guilt, but it’s still there nonetheless. And I was told that no one would ever be able to tell me that because of my heart defect that’s the reason Leah has hers, but it’s just a strong coincidence that we both have left-sided defects. So I struggled with a lot of guilt in the beginning. I don’t so much anymore, because I know it’s irrational, and there’s nothing I can do about it. I don’t have control over it, it wasn’t like drinking a Coke did it, or eating a french fry did it, it’s just one of those things. So I think that’s probably the hardest struggle that I’ve had is just wondering if it was hereditary and if it’s because of me that she’s so sick.

 – Donna, mother of Leah, age 10, HLHS


I was diagnosed when I was 24. I was followed until I was 18 here at Children’s Hospital in Boston, but at 18 I had an adult heart and it looked completely healthy, so they essentially said—and this was pre-genetics, so they didn’t know—I think they suspected it was genetic, but they hadn’t identified the gene yet, so at 18 they essentially said, “You have a perfectly healthy adult heart, if you don’t have it now, you aren’t going to get it” so I was sent on my merry way.

It was in college that I started having some symptoms and suspected that something might be going on, but again I had been told I didn’t have it and would never get it, so I ignored them. Once I was about 24 I started having episodes of fainting, and at that point it was like “something’s going on.” I didn’t know if it was my heart, but I thought I should at least look into it, and that’s when I was diagnosed. So obviously it was hard early on seeing Raegan go through this, especially when she’s had to go through surgeries and coming out of the myectomy and seeing her all hooked up to the machines and pale and the tube down her throat and the horrible scar. They cover it, but they don’t really cover everything, so you can see some pretty ugly stuff when the kids first come out of the OR, because it’s just the tape at that point because they need to keep an eye on it. So that was hard, but I don’t know that it was any harder for me because I have the condition.

I’ve never like felt guilty that I gave this to her because that would be like me blaming my mother for giving it to me, and I never did, it’s just not logical. It’s more just the typical stuff, the parenting response that you don’t want to see your child going through something that is really hard for them and it could get harder and that causes them any distress in any way.

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


We had no warning. We actually assumed that it was not genetic. We really thought that because there’s no history in my family, there’s been no sudden death, we thought that it was hopefully just me. But I never really exercised before, so maybe that brought it out. She did exercise, and she’s a real tough kid and every once in a while if she’d go running with my husband or something he’d say, “She seems a little out of shape!” which is weird because she was in great shape and she did CrossFit class and didn’t feel well during it, and now that I look back, those were my symptoms too, that I had.

 – Amy, mother of Rebecca, age 19, ARVD

Thinking about having more children

We had had difficulty getting pregnant with my oldest and with Amelia, and a short while after being home from her first surgery, I found out I was pregnant, and that was a joy. We had planned on waiting a while because we had just been through everything with her, but God had other plans and blessed us with him. It was scary as all heck, because the risks are higher with every child you have after a child with congenital heart defects. But our youngest, has no heart issues. I had done normal ultrasounds and then I went to Boston and had Level two ultrasounds to check his heart. Initially they did think that there was something wrong, and I had to go back for another ultrasound to try and get better views of his heart while in utero, and then he was finally cleared, and he has been checked after birth too and has no heart problems. But that was scary. I’ve never known any different than to be in the position that I’m in. It was busy when they were all young, to be dealing with a child with heart problems and then an infant and then a toddler on top of that.

 – Roxanne, mother of Amelia, age 7, Dextrocardia


Frankly, I think Diane would say this, we wanted to have three or four kids. We had genetic counseling and they gave us the percentages of having another child with this disease and that didn’t seem fair, so we’re stuck on two. But we’re waiting for grandchildren.

 – Bill, father of Jake, age 21, HLHS

How it’s affected our family

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

How it’s affected my child

I think it’s made her really compassionate to other people who have any problems or have to go to the doctor or the hospital. I think she understands in a different way.

 – Kate, mother of Alexandra, age 8, Pacemaker


Since his surgery, his development is definitely behind other kids, but he’s been developing. It was harder for him to keep up with kids, where other kids were out of their strollers at two or three years old. If we went for longer walks, we’re talking when he was five, six, even seven, we would still have to pop him in a stroller to walk around. He’s progressing in all areas, steadily, but he’s definitely behind.

 – Abigail, mother of Johnny, age 9, HLHS


She was really good about doing what she needed to do, she’s had a really strong front. She gets really irritable before the doctor’s appointments. She really likes her doctor a lot, she feels like he’s on her side, but it’s very frustrating for her to—she’d rather not deal. But she does, she takes very good care of herself, but she’d rather not think about it.

We didn’t get a therapist for her, which was a mistake. Even if your kid seems like they’re sailing through this and they haven’t hit a speed bump, get them a therapist. And my friends were recommending that to me and my husband and I kept saying, “She’s doing great, she’s Teflon, this is all bouncing off of her,” because we wanted to believe that, and she was doing great. Senior year, so maybe a year and a half after the first episode, I did get her a therapist, and she said to me, “We should have done this a long time ago, this is really helpful.” She doesn’t even have memory of being an athlete, she got rid of that, she didn’t look back, she just moved forward. So the therapist was helping her look at what she’s lost and she hadn’t even looked at it that way because she’s moving forward. It was very helpful for her to have a therapist, and then when she went to college, I knew she had to have one, so we went for orientation and set her up with a general practitioner and a therapist.

 – Amy, mother of Rebecca, age 19, ARVD


If you talked to Jake today, he would tell you all his plans. He has plans. He knows who he wants to work for, he knows what he wants to do, he’s got very strong likes and very strong dislikes, and he’s got very strong opinions. He in no way shape or form is thinking that he will live any less. Matter of fact, he’s probably making plans to do more than the rest of us. He’s just one of those guys, he’s become extremely charismatic, not just because he’s my son but he’s been talking to grownups since he was a tiny little baby. He very early on got used to having conversations with grownups, and we’re convinced that that kind of shaped his character. He’s always liked older people, he’s always liked having grownup conversations, even when he was little, and mainly I think because that’s the way he was raised, talking to doctors, quite frankly. As far as his plans, he’s aware that down the road there may be some blips, but he said to me, “You know what dad, I have half a heart, that stinks, but we’ll deal with it.” So that’s the way he looks at it.

 – Bill, father of Jake, age 21, HLHS

How it affects siblings

Miranda: It’s interesting, our older kid has really wanted more doctor-like attention. She’s like, “Can I have that medicine too?” or “Oh I have a headache, I think I need some Tylenol” or “I think I need to go see our doctor about this,” or wanting to play doctor a lot more. So we’ve been trying to be really careful about making things non-medical in our house, and if Serena needs medicine, we do it after the other one goes to sleep, or in a different room so we’re not—I don’t want to say romanticizing medical problems, but that’s almost how Mallory sees it. I mean, Serena’s getting all this attention for it, right? So Mallory thinks it’s a great way to get our attention.

Allen: It’s not a great way to do it, it is a way.

Miranda: Well Mallory’s way is a great way, I’m not saying Serena’s way is a great way. You don’t need to have open heart surgery to get our attention, but a little headache will go a long way.

 – Miranda and Allen, parents of Serena, age 2, ASD


One day my older daughter Emily kind of went on a tangent about a boy at school. How the boy has a special helper that comes with him to school and they put padding on all the corners for him, and how no one’s allowed to bump into his chest. And I literally started bawling in the dark. Because I realized that’s the little boy in her class that’s had three open heart surgeries. And I thought like, “Wow, she has taken it to heart” like, the school nurse came to talk to the class, and Emily’s like, “I have to take care of him, I have to look out for my classmate.” And I told my husband, a lot of that is just looking out for her sister. Her and her sister—they’re a team. I’ll be dead and gone and they’ll still be a team. So I think it’s important to talk to them. My heart mom friend brought that up for me, like “Have you prepared Emily?” Because Emily will remember it, Elizabeth probably won’t.

 – Anna, mother of Elizabeth, age 2, VSD


It’s been an issue. Zach’s twin, Wes, is very empathetic, so he’s even more bothered by some of the things he sees Zach go through, and he’s had anxiety from it. That’s one of the things I’ve checked in with the psychologist a couple of times and I’ve said, “What should I be doing? Should I be getting some outside help?” and she’s helped me with that.

I’ve found ways to work in special time with Wes. Like, Zach gets 12 hours of therapy a week after school, so every day after school for two hours, Zach’s in therapy and Wes and I just have special time. We bring a backpack with toys to the therapist’s office, because we have to stay there with Zach, but we’ll read books, we’ll play Legos together, things like that.

Now that he’s older and understands more—for example, in preparation for this trip, we explain what’s happening and then we kind of give him the opportunity, “Do you have any questions? Is there anything you want to ask the doctors about?” and I think that makes him feel a little bit safer in all of it. But it’s really hard to balance the two, because Zach needs so much attention and care, and we don’t want Wes to feel like he doesn’t get that, or the only way to get it is to act out negatively.

 – Alice, mother of Zach, age 3, Single Ventricle


Carson’s siblings knew that he had a “broken heart” is how they described it. They had at that time turned two and four, so that was actually a really good thing. They didn’t know that babies don’t usually stay in hospitals for a month after they’re born. They had no concept of what was supposed to happen when you have a baby sibling because they were too young. So nothing really seemed odd to them. We did explain that he was sick and they would make a heart with their hands and they would take one away and they would say, “Carson only has half of his heart and he had to have surgery.” And that’s pretty much all they knew. They knew that he was sick, they knew they had to be careful with him because his chest was sore from his surgery, but they were so little, they didn’t really understand any of it, which was great, actually. They didn’t need to. It’s a pretty intense thing for a kid to try to wrap their head around, so we were very matter-of-fact about it. “Yep, your brother is ill, he has half of his heart, he had to have surgery, we have to be careful with him, but I think he’ll be okay.” And that was it. That was kind of the end of the story. They didn’t ask too many questions.

 – Amanda, Mother of Carson, age 5, Heterotaxy


Her brother and sister, they’re so protective of her and have been since she was a baby. I remember she was an infant and I would have this crib in my dining room so that when she was sleeping she was right there, and I remember my daughter who was only three at the time putting her stool up next to her crib and wouldn’t leave her side and would eat her lunch next to her and it was like she was watching over her. And I feel like my son did the exact same thing. Isabelle climbs out of her bed at night and she goes to her brother’s room, she goes and snuggles her brother. They’ve been so good and they’ve never been jealous of all the attention Isabelle has gotten by multiple, multiple appointments and my sister, who came for every single one of her echoes—she’s had so many, every appointment that we’ve ever had at Children’s has always been on a Tuesday and my sister has always taken the day off of work and always been there for my other kids and taken them to school and anything else they had, so it’s just like kind of a team and she’s just always done that. When she comes home from the hospital they’ve been, “How can I help you?” and they wait on her and they tuck her in with covers and Isabelle, she’s never been angered by it, frustrated by it, she’s very matter-of-fact.

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


Shana: We have an older daughter who is 18, and I think anybody who really took it hard was her. She really had trouble. I would have liked for her to have been here, she just went into this—she didn’t want to be with anybody. Her and Jade fight like cats and dogs, but she’s the one that took it the hardest. She was strong- I mean we were trying to be strong for her, but it was awful.. Like schoolwork, grades dropped, didn’t want to be bothered with people, always getting in trouble, it was a lot for her to deal with. I guess from her point of view, children her own age talking about stress, how school stresses and they have no idea—she’s like “You all have no idea what it is about stress” or “My little sister’s going through this, nobody knows if she’s going to come out,” she took it real hard. She’s coping now, they still fight

Nick: Like sisters do.

Shana: It’s not easy. It’s really not easy at all.

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


It was tough both times to leave my sons. The second surgery we had both our sons whereas the first one we just had our oldest. It was tough, it was hard on them to be away from both my husband and I. But we called daily and they knew—we had kind of presented it to them by saying that Amelia had boo boos on her heart, that the doctor had to fix them. And that mommy and daddy were taking Amelia to the hospital, that they were going to stay with Grandma and Grandpa, and that when Amelia got home she would be better. And they saw the scars and we vaguely explained, kept it at their level, what was going on.

We try not to put a lot of attention on Amelia or up play her or anything like that because I don’t want her to be treated any differently than her brothers. I don’t want them to feel that she gets more attention. And we try to do it equally. Certainly she does get more attention at times, there are trips to the hospital and follow ups and stuff. But I think they obviously know there’s something wrong with her heart, there’s never really been a question about it, and now they don’t treat her any differently. It’s not something that ever really comes up either. It’s kind of like it’s there but it’s not talked about, but not in a bad way.

 – Roxanne, mother of Amelia, age 7, Dextrocardia


Well, my husband would say, “You were not in your mommy’s belly, you were in her uterus,” so I think he’s always been explaining exactly what’s going on. One thing that I’ve realized with any kind of medical thing is just go ahead and talk directly to them and tell them exactly, “This is what’s going on, this is what Alexandra’s heart is like, and this is why she needs a pacemaker.” So we explain it to them and when any questions come up we talk about that. But we’re pretty open about it. We’re happy to talk to our kids about it, but not make it the hugest deal ever. And often with appointments or she just was in the hospital, my oldest is really sensitive—so she worries about her sister sometimes. But I don’t know if they could explain it to you, but I think they realize that she has this and it helps her heart work so that she can just enjoy life like they do.

When she was just in the hospital and came home, she kept all this stuff and ended up putting it in a box and she explained it to her sisters, and it was really neat. They all gathered in her bedroom and she was like, “This is that, and they did this,” and they came to visit every day in the hospital to ask her how she’s doing. So I think they enter in as much as they’re able to.

Typically for a pacemaker, they just put it in and then the next day you come home, so her stay in the hospital, it might have been a little longer, but I think that they were still worried about her. And then she got a lot of cool gifts from friends that they enjoyed too. And my husband and I—I stayed in the hospital, so he was with the girls at home, and I’m wondering if it would have felt different. But what we did do is my oldest ended up having to take this standardized test during it, and so when we got back while Alexandra was sleeping, I took both of my other daughters and we went and had hot chocolate and just kind of talked and connected. So I think that’s something to think about, but having three is never going to be fair, so I also think of that. I will say, her twin was “off” for a day when she went to pacemaker camp. I don’t think she wants the experience of having a pacemaker put in, but the pacemaker camp does sound really fun. So I think there was—it was really funny to see her kind of not know what to do without her twin. And they’re not—I mean they’re pretty independent, but they always come back together.

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


When his sister was younger, we were away for longer periods of times, and we were so fortunate that our family really jumped in and took care of her, they would bring her up to visit for a day or two here and there, but I think they kept her so busy and occupied when she was very young, and the support that the Child Life team gave us when they talked to her about Johnny’s condition, that type of thing. As she’s gotten older, she definitely has more questions, I mean she’s 11 now, but we haven’t really gotten into the nitty gritty of things. She knows he has certain restrictions—not restrictions, but things that he is not able to do as well and that that’s a result of what he’s been through. I think because we really made a conscious effort to not make it—of course it was really the extent of our lives for three years, don’t get me wrong—but it wasn’t our focus with her, we tried to focus on her and the things that she was doing as hard as it was, because sometimes the medical stuff can be straining and overwhelming. Whether she was doing a gymnastics show or she was doing a dance thing, for whatever reason there was a doctor’s appointment and we couldn’t be there, we made sure two grandmas were there, if not the other relatives, so I don’t think she ever, at least she has never displayed that it’s a traumatic thing for her.

We’ve always brought her to all of his regular appointments, so she sees him get his echo, his EKG, his X-rays, and that type of thing, so we included her in all those hospital type experiences, so she sees and knows what’s going on, but I think seeing that and I think that exposure helped her be okay with everything. But as a parent now, I’m more worried about in the future, how these things can creep up, how both of them will react and respond, and I think that’s the big question in my mind right now.

 – Abigail, mother of Johnny, age 9, HLHS


My daughter, she’s 25 now, but at the time she was 15. And it had always been her. So she wasn’t thrilled about the fact that there was going to be a new baby. Of course, once he was born and she held him for the first time, she was completely in love with him. But then when we found out about Austin’s heart, she had a tough time with it. She didn’t talk a lot about it, we had been posting-we had started up one of the CarePages, and she said “Can I post on the CarePage?” And she did. And this was after his first surgery, which didn’t go too good, and she kind of blamed herself. Because she felt like before he was born, she wished he wasn’t coming. So she had a difficult time with it.

 – Grace, mother of Austin, age 10, TOF


Every year before her brother’s annual visit he gets anxious because he knows that he has a greater likelihood of developing the same thing as Raegan than not. It’s going to be really hard on him if he does find out he has it because you know he’s gotten into karate, he’s gotten into weight lifting—he’s into exercising, he does push-ups and sit ups every day and he doesn’t want it to change his life. Originally a few years ago when he’d say, “I don’t want this to change my life like it changed Raegan’s,” I’m like, “Well, it would mean you’d have to take a pill every day, that’s about it at this point.” He wasn’t into any sports or anything like that than and now he is, now they’ve become very important to him. So I don’t think he’d have to give things up completely, but I think he’d have to make adjustments that at 15 he wouldn’t want to make, and I think he’d be pretty angry.

There are times that he doesn’t quite get it in terms of her condition, because he’ll tell me, “You’re being overprotective” or “Why aren’t you letting her do it?” or “She’s going to be fine.” My husband and I, we remind him, “Listen, we’re the parents, thank you for your opinion, but you’re her older brother, and her best friend granted, but that’s where it stops, and we’re the ones that have to protect her and raise her and make sure she’s safe.” But then other times they’ll go places together he knows he has to keep an eye on her and he knows he has to watch out for her and he takes that responsibility seriously. So when we go to a fair or something like that, he knows that he’s the one that carries the backpack. He watches, he keeps an eye on her, makes sure everything is good.

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


My son Ethan was 13 at the time. We of course had been very involved in his life, because we were that kind of parents. We were very involved in his school, I used to volunteer at the school, I’d volunteer at all these sporting activities that he used to do, we were very involved with him. When this initially happened to Chloe, we didn’t have the time for him. We were aware of that though, we were aware that we had to make time for him, but initially we were in the hospital 24/7. So, unless he was at the hospital with us, we weren’t with him.

Unfortunately, we have no family in this country, so we had to rely on friends. But the friends that we have are not close friends that we grew up with—they’re just friends, so it was difficult for us to rely on these people, or for us to expect anything from them really. Our community and everybody rallied around, the church we went to at the time, they rallied around, everybody’s willing to help, but you know that’s only for a certain amount of time. Once you start to be too intrusive, it’s not going to work out for anybody. Initially, friends of ours who lived around the corner said, “Don’t worry, we’ll take Ethan” so he stayed with them for a few days, they said, “Don’t even worry about him, he’s fine” which was great, it was a great relief for us. Then eventually we had family fly over from England who stayed in our house who could then look after him as family.

He was 13, he really didn’t understand, as much as we tried to explain things to him. His perspective on the whole thing going forward a few years is that he understands it’s a part of his sister’s life, he understands it’s a part of his life, and the family’s life, but he doesn’t want it in his face. He doesn’t want to be that involved in it. I used to go around to schools and talk in schools about what happened to Chloe, to be prepared, all this kind of thing, and I said to him, “Can I go to your school?” and he says, “Absolutely 100% not. I have my own life at school, people, my friends and my teachers don’t know about Chloe, and I’d like to keep it that way. Do whatever you need to do anywhere else, but I’m asking you not to involve me in it.” So I have to respect him for that.

 – Jim, father of Chloe, age 13, CPVT


I remember when I got the phone call from my daughter’s coach, I must have screamed in the phone, but he was 11, so he was in a full panic, and he’s usually just kind of clueless. I remember saying, “Oh my God, I have to go to the hospital, I’ll drop you off at your friend’s house,” and he said to me, “Wait I’ll go to the neighbor’s,” and I was surprised that he even realized where he should go. And my neighbor is a doctor, so I thought, “Okay you’re right” so we ran over there and we were both panicked and she said to me, “Okay, who are you going to the hospital with?” I said “I’m just going to go myself” I’m very, very close with her and she said “No,” put Jack in the house and she came with me, which was incredible, that emotion was really helpful because she was a huge advocate for me when we got to the hospital. We’re an anxious group anyway, we have anxiety as our shtick, and my son’s got anxiety, but he’s doing really, really well. He’s doing well in school, he’s got a lot of friends, he’s out visiting my daughter right now. I didn’t have him go to a big high school like her, because I was worried that if he had the same thing, the schools just don’t help enough when you miss school, you get behind and I just was worried, so I put him in a small school. Fortunately, it looks like he doesn’t have it, which is amazing.

He had the reveal monitor, it’s scary, health stuff is really scary. He’s someone who’s scared about his health, so yeah they put the reveal monitor in him and he made more of a big deal about the reveal monitor, which is like a thumb drive, than Rebecca made about the defibrillator. I mean really it was more drama, he could feel it, and he just cares more about his appearance and his body and stuff. But that really scared him. I was with Rebecca when I got the call that it looked like Jack didn’t have it and it was the most- I felt like I had won the lottery, it was so amazing.

 – Amy, mother of Rebecca, age 19, ARVD


Until they were probably eight and ten or nine and eleven, Matthew was very protective of Jake, looked out for him, kind of doted over him a little bit. And then one day we heard this huge ruckus upstairs at the house, and they were wrestling. For us, it sounds like a silly thing. They were doing what little and big brothers do, they were just wrestling. And for us that was like, “My God, that’s fantastic!” Because number one, Jake feels well enough to do that, number two, Matthew’s comfortable enough after all these years to wrestle with his brother, and number three, they’re just doing what normal brothers do. So that was a big day for us. I mean, you think about normal things that kids do.

 – Bill, father of Jake, age 21, HLHS


Matthew was such a sweet big brother. And I think that a lot of families probably deal with an older sibling that might be jealous or might feel kind of put out, that they’re not getting equal time and attention, because that’s so weird to have that happen, but I never had any of that with Matthew. Ever. He just never was like that. He was nothing but incredibly loving to Jake. We sort of said, “Jake has a sick heart” and didn’t say much more than that, other than “we need to take him to the doctor” and things like that. I remember two particular incidents really well.

One was right before the third surgery, Matthew asked me, “could Jake die?” I remember lying to him and saying “No, that’s just not going to happen” and feeling really tormented by lying to him, but I felt like it was what he needed me to say at the moment, and that a grown-up answer to that wasn’t going to be helpful to him. So I said, “Nope, that’s not going to happen, Jake’s going to be fine.” The other incident that sticks out in my mind is after the second surgery, Jake had immunizations and he had strange reaction to them, and I found him in his crib very grey looking, and rushed him into Children’s. We were on our way in the car and Matt started to cry and said, “I don’t want anything bad to happen to Jake because I love him.”

And it just struck me that, he was just about three, and pretty clued in emotionally to my emotions, and that’s hard, because I know that I probably worried him and scared him in ways that a three year old shouldn’t have to be. And it’s pretty hard, you can’t segment that out, you do the best you can and I’ve always said we did the best we could with what we had. We have two amazing children who are so kind and loving to one another. We’ve tried really hard as a family to keep a sense of humor where we can, sometimes it’s a little dark, but we do the best we can.

 – Diane, mother of Jake, 21, HLHS


Richard: I think when David was born, his older brothers were concerned about having to share the universe with another child, in particular Charles. But then when Charles learned more about David’s condition, I think he was probably the one who was the most worried about him.

Courtney: But also when I was hospitalized, Richard took them—every night they came over to the hospital and we all had dinner in my room. They were smart little kids, they probably knew a lot more than I thought that they knew. We didn’t pretend everything was wonderful. I would have probably said, “He has a hole in his heart, they’re going to fix it.” I think that they just trusted, we tried to be really calm around them about it, and I think that helped us probably to remain calm. We just trusted that it was going to be okay. You’ve got to believe it.

 – Courtney and Richard, parents of David, age 23, TOF

How it’s affected my parenting

It changes the way you see the world. It’s amazing what one experience can do to recalibrate how you feel about life. Is having a two year old all fun and games and easy every minute of every day? No. But it’s all in the way you see it. Whether it’s a medical diagnosis or a temper tantrum, or whatever it is, if you can pull the positives out of it, you’ll make the best of it and you’ll both grow from it. For Avery, we were able to make the Children’s Walk a really wonderful experience for our family and raise money for Children’s in the process, and we were able to think about parenting in general as, “We can do this. We can do anything now.”

The little things, meeting milestones, the whole “Is your baby crawling yet, is your baby walking yet, do you have them in such and such class, you know, is she potty trained?” None of that matters. It’s all about health. If you have your health you have everything, and you can build off of that. We’re huge believers in finding that silver lining, no matter how much digging you have to do. It’s really made us better parents, made us better people, and if everything happens for a reason, we’ll be better parents to Avery for this.

 – Jessica, mother of Avery, age 2, ASD


If I would have had Elizabeth first, that would have been my normal. That would have been all I knew. So having the comparison of this beautiful vaginal delivery, I brought my baby home, took her on a walk the next day, to me being in the hospital for a month and Elizabeth being in the hospital for three weeks, and then just trying to really keep her alive.… I don’t want to make light of this, or use it inappropriately, but one of my girlfriends, another NICU mom, she said “I have PTSD from the experience.” I thought about what she said so much—not that I’ve been diagnosed with PTSD—but there is something like that where it’s so upsetting to even think about. I recognize now looking back at them, they’re healthy and they’re fine, but I told my husband, I’ll still have nightmares where I wake up and I’m like “Oh my god” and I can see her hooked up to all the machines again, or she has an IV in her head again because she kept pulling them out of her hands. It’s things like that that, when you have a healthy normal child you never even contemplate that being a possibility. That’s just beyond the realm of possibility.  The biggest concern with Emily was like, “am I going to pump or am I going to breast feed her? I’m going to make her baby food, what’s she going to wear, and what perfect car seat are we going to have?” With Elizabeth, all those things seemed so trivial. It was like, “I need her to breathe and not be blue today.” And Emily, being two and a half, I don’t know if it’s just her personality, but she rose to the occasion. Part of that was my parents being here a lot. They would take her to the NICU and show her through the window every day, “That’s your sister. She’s coming home.” Because she wasn’t allowed to touch her or see her.

 – Anna, mother of Elizabeth, age 2, VSD


Day-to-day, it doesn’t really affect us. It sort of pops up when she is off or gets sick with something else and then you worry like, “Oh my God, does this have to do with her heart?” or “Is this going to affect her heart?” This is just a silly example, but in April she got the stomach flu, and we had no idea what was wrong with her. She was super out of it and rolling around on the ground and crying and we were staring at her like, “What’s wrong? There must be something wrong with her heart, we need to call the doctor, we need to call the cardiologist!” I’m sitting there on the phone, it’s raining, and she throws up all over the floor. So, it had nothing to do with her heart, but that’s the first place that your mind goes. Nothing was wrong with her, she had the stomach flu. But when she’s sick, your panic level starts to go to that place because if it were something with her heart, you never would not want to have made that phone call. It’s those times when it pops back up and I realize even though she’s fine and her life is going to be normal, I’m going to have to mention it. She’s going to preschool in the fall, I’m going to have to tell the preschool about it. In all likelihood, they would never know, I have to tell them. If we hire a babysitter, we have to tell the babysitter. It’s those kinds of times.

I think it has made—and this is going to sound really weird—but I think it’s made us actually more relaxed parents. She’s our first, she will be our only child, and I think as people, we tend to freak out about a lot of things with kids, but when your child has had two open heart surgeries before the age of two, and has gone through as much as she has gone through, it’s kind of difficult to get worked up because she has a cold, or freak out because she has a fever or because she fell. Our adrenaline level has run so high that I think we’re very relaxed about a lot of other things that would send an average parent with a normal healthy kid crazy. So it’s weird, but I think it’s actually made us less prone to freak out about stuff. It’s a little backwards obviously, but that is sort of an experience that my husband and I talk about. We wouldn’t wish this on her, obviously, but I think it’s greatly affected how we turned out as parents.

 – Leslie, mother of Margaret, age 2, VSD


He was my second child, so I was definitely trying to learn how to care and use the resources of the nurses that came into the home to check on him. We had the home care that came out to us, but there were a lot of sleepless nights, and we had to do the monitoring with oxygen, and his coloring was off, so there would be many times where he would just be in his stroller asleep, and looking cute, but when they’re that little, it’s hard to see if they’re breathing or not, so I would have panicked moments where I would rip him out of the stroller, out of the crib.  You have a lot of those moments, where you’re a little more anxious than perhaps you’d be with a child without any medical issues. But we were always in touch with the hospital, if we had any questions, our doctors probably thought we were crazy, but it was a comfort to us, to get on the email or get on the phone and ask any little question. With our doctor at Boston, we would call or email and they would get right back to us. It wasn’t some side person that wasn’t really involved in the care, it was always his cardiologist, or the nurse practitioner who knew him very well. So I always felt like I was talking to someone who knew intimately what had gone on with Johnny, so that helped even though it was scary. Between the first two surgeries, I think that was the hardest time because we were learning how to care for a child with medical needs, and didn’t really know what to expect. So, it was tough. That was the hardest time.

 – Abigail, mother of Johnny, age 9, HLHS


I said before he was born, I said, “I’m never taking my kid to Disneyworld until he’s like ten, because he’ll never understand what it’s like.” Well, he’s been about four times already. Because it was, “Will we get him to Disney?” “Well, we don’t know.” So we went on a vacation and we went on a cruise, we went to Disney.

 – Scott, father of Austin, age 10, TOF


The first time Chloe and I got on a plane, I was terrified. What if something happens on the plane? I’m sure they’ve got AEDs, but we have to check with the airline that they’ve got an AED. What if something happens when we’re up in the air and we’re flying? We couldn’t go home for a long time, because it was too long of a flight. We flew to San Diego, myself and Chloe. We went with some cardiac group and we met the two doctors who basically invented CPR and AEDs, and it was at SeaWorld, a big event, it was great. But the flight was terrifying, and we wanted to go and we had to make a decision whether we’d go or not. Do I not let her go to SeaWorld and meet these people and meet all these other survivors because I’m scared of putting her on a plane? Or do I vocalize and say, “Yes, she has to lead as normal a life as possible?” So I decided “Let’s put her on the plane.” She was fine.

 – Jim, father of Chloe, age 13, CPVT


My husband and I talk this over a lot, so I rely on him a lot, and then the doctors, and then my own experience. I tend to downplay and I tend to let the kids live. I don’t like restrictions. So I’m worried that sometimes I’m too permissive, that I don’t pull on her enough. But I want her to go do things. My husband and I always have a hard time not dismissing stuff, like when the kids fall “You’re fine, you’re fine,” and even with ourselves when you don’t feel well but you have to push through it. So knowing where the line is between “You’re fine” and “This is serious, we have to deal with this” is hard and trying to give your kid some space.

I think what Rebecca would say is that we’re always on her, and we are. I’m always looking to make sure she feels okay, there’s a lot of attention focused on her and her health. Her complaint would be that we are overly focused on her and her body, and I don’t think she’s wrong about that, I think it’s valid. I had to give her some space just to be a teenage kid, so we tried but it’s really hard not to be just nervous and on top of them. I wish I could have relaxed a little bit about that, but our family went through trauma so we all were had this like post-traumatic stress and this anxiety and we’re just trying to get through.

It’s just, kids are resilient. That’s important too, to know kids are way more resilient than we think they are. And you can get through some really hard times and be okay. As a parent you age fast, you go grey and age.

 – Amy, mother of Rebecca, age 19, ARVD

Helping my child cope with having a heart condition

Miranda: I took her three days after we got home to the pediatrician to get that chest tube stitch out, and she was fine in the office, but as soon as we got in and I sat on the exam table, she started to really lose it. She definitely had this association of someone pulling out a stethoscope, someone listening to her heart, and then the act of someone poking around and trying to take a stitch out, she got much more upset about that than she normally would have I think. But on the flip side, when we took her to the cardiologist after that, she was pretty calm, and he listened to her heart and she just had this look about her like, “I’m watching you. If you do anything more than listen to my heart we are going to have issues with each other.” So there’s definitely a weariness, but also a familiarity with someone listening to her heart or—Allen, you went to her echo and you said that went fine.

Allen: Yeah, those two appointments were within the first week. I took her for an Echo and you would’ve thought we were going to the zoo. She had a great time. Maybe we just got lucky with what they were showing on the TV, but we sat in the waiting room and she watched TV and then when it was time to go in, we went in together and she got weighed and measured, and I sat down on the chair, she sat on my lap, we watched TV for half an hour as they did the echo, and we went down and had a muffin and she thought it was great. Maybe she’s a pro now. I don’t know what it is, but she had a great time. Sometimes when mom’s around there’s a little bit more anxiety just because mom’s the safety net. That could be a part of it too.

 – Miranda and Allen, parents of Serena, age 2, ASD


He usually has a catheterization every two years and I know how invasive and how serious even that is. We play it off to Austin as, “It’s just a cath, we’re going to be home in one day.” The last one he had, I remember he had a difficult time. It was during this past year and he was petrified. He had just been talking to his teacher at school, she knew how scared he was and how nervous he was about it, it had affected him at school. He said to me, two nights before we went in, “What if we just don’t go? Will I be okay? What if we just don’t go?” And I explained to him, “Your doctors all know what’s best for you, and we have to go.” Though I know that many times before, especially when he was a baby and I knew I had to hand him back over for a surgery, I used to think “Just don’t go. What if we just don’t go?” Of course we’d never do that, but it’s a thought. You just don’t want to do it. You just don’t want to do it.

He’s gone through the same emotions that we’ve all gone through—you get mad, you get angry, you get scared, the “Why?” He went through the “Why me?” Getting upset has been more of, “Why can’t I play football? Why can’t I…” as he gets older.

The fear of going into the hospital—there’s so many reminders to him. I mean, he’s finally starting to get a little better with having a blood draw or if he’s got to go in for a lung scan and he needs an IV put in. He went last year, he did amazing and I look back over the years and think, “Oh my God, he’s come so far.” It has been so traumatic for him. I can’t even count how many times he’s had to be stuck with a needle, or gotten an IV. He’s so much better than he used to be. And that’s been gradual.

I remember when I started him in preschool, and it was the first day and he got dirty. The preschool teacher had taken him in to get his change of clothes, and she put on the gloves, the plastic gloves. And he went crazy. Hysterical crying, they couldn’t calm him down, they called me like “We can’t calm him down.” I went racing up there and picked him up and he just was crying hysterically. She said “I don’t know what happened” and as soon as she said, “I went to put on gloves,” I said “That’s it. He thought you were going to stick him with a needle.” And I said “You know what, we’ll try this again next year.” I wasn’t ready. I came home and told my husband “He’s staying home with me another year. He’s not ready, I’m not ready.”

 – Grace, mother of Austin, age 10, TOF


Nathan: I think it’s been so long since we’ve had to deal with any issues, it’s not even stuff that she thinks about right now. The only thing she deals with on a daily basis and she does a really good job with it, is taking her medicine and moving on. It’s a secondary thought. It’s just a normal day, take your medicine and do everything else like a normal family, a normal person.

Donna: We strive for normalcy. We didn’t go through all of this to live in fear, live in a bubble. You know, you go through all of this to help your child have the most normal life that a child can have.

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


From the time she could really understand, she understood that there was something wrong. Her surgery was all about her knowing what they were going to be doing. With her pre-op visit, the doctors explained it at an appropriate level, they’re very good at making the whole family aware of what’s going on and not just telling the parents and having the kid out of the room. They think it’s important for the child to have an understanding of what’s going on, and I agree with that, so she knows that she’s going to get a defibrillator at some point.

At this point I think she really wants to have the defibrillator because we carry an AED around with us, and she has to take it with her when she goes places and it’s always wherever she is. At school it’s the same thing, whenever they go off property at school on a field trip or something like that, there’s a backpack that goes along with her with her AED in it, and that bothers her at this point, like “I really just want to get rid of the backpack, when am I going to have this thing put in me?” So she sees it as something that will normalize her life and make her appear more like all the other kids because she doesn’t have something that’s a physical reminder and a physical sign to everyone else that she’s different somehow.

So there have been times when Raegan has gotten really frustrated with it like, “Why do I have to do this? Why can’t I do this? If I could do this when I was little why can’t I do it now?” We’ve had those conversations and she gets really frustrated. She’s very stoic and very tough and she tries her hardest not to cry, which I don’t get, but that’s just what she’s made of. We’ll sit together and I give her a hug and I explain it as best as I can. I said “I know, it’s totally unfair, it totally sucks, it’s no fun, it’s all the bad words you want to say put together, but that’s the way it is and we just have to deal with it and we have to hope that there’s new good medicines and treatments coming down the pike. Someday this isn’t going to be as much of a problem as it is now, but this is what it is now and we just have to live our lives around it and not let it control our lives.”

We’ve gotten very good at that, lately I’ve probably gotten even more lax with her. I let her go for walks with friends without her defibrillator, I’ll let her have a sleepover and I won’t like meet with the parents ahead of time and explain everything to them. Just a couple weeks ago she had two other kids at the house and one of them knew about the condition so I had her bring her backpack and I told her, “Just make sure Abby knows where the backpack is because if anything happens, Abby knows what it’s for. She may not know what to do with it, but she’ll at least know to tell the parents that this backpack that has the machine that you use if this happens.” We’ve been told that after the myectomy, the chances of anything happening are so slim at this point, it’s more of, “Well we have the defibrillator anyway, we’ll just keep it. We might as well just send it with her.” But there are times that we send her without it because I want her to have as normal a childhood as she can have. So I resign myself to saying, “Okay, she needs to have a normal childhood, so I will take on that extra risk and I will take on whatever repercussions, I’ll own that, so that she can go out and do things just like everybody else and not feel as though she’s hindered.”

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


When she got released, it was recommended that we actually have family therapy. They said with Chloe especially, but with all of us there was some chance of post-traumatic stress disorder. Family therapy was myself, my wife, my son who must have been 13 at the time, and Chloe. The four of us have different ways of coping with things. The four of us have different ways of coping with Chloe’s situation. So to sit us in a room and ask us all the same question and expect us to speak up—we didn’t. And if we did, it didn’t cause an argument, but it did cause some tension, which I think our therapist saw fairly quickly, so he disbanded that. He was like, “This is making things worse instead of better, I need to see Chloe, not you guys. If you guys want to go and see somebody else, I can recommend somebody or I can help you with that. I believe the best treatment for Chloe would be one-on-one play therapy.”

She was big into baby dolls, looking after baby dolls, all of that, so she’d take her baby dolls down to his office and they’d play. I’d sit outside and listen and hear the two of them playing. It was like she had her bestie over. Her dolls would be injured, they wouldn’t be injured with a band aid or a little bandage, they’d have tracheotomies or they’d have major scars on the top of their head where they’d had some brain operation, and they all of course had the heart injury scars. To me it was, “Why are her baby dolls so sick? Why can’t they just have a broken leg from falling off the swing?” But as her doctor said, “This is what she knows, and this is what she is trying to come to terms with, and to her, this is normal.” Basically, the majority of the kids on the PICU had tracheotomies, and that was what she was used to seeing, that was normal.

Something he said that really stuck with me was, “No person is supposed to have a concept of their life ending until they reach middle age.” It’s not something teenagers or people in their twenties, even thirties really think, “Well, I’m going to die one day, and what’s going to happen then?” But she had to face that reality when she was six. She’s at a point in her life that she’s reached before she should have.

So she saw her psychiatrist up until a point where he was leaving to go work at a different hospital, and he said to us at that time, “Chloe can continue to see somebody, but in my opinion, I think she’s got all the benefit she’s going to get from it. She may need it when she gets a little older, maybe when she’s a teenager things will arise that she’ll need to go in and look at again, but not where she is at the moment.” One of the main points he said was, “Look at the baby dolls. They’re not as sick as they were.” Before, some of them would die. He said, “None of them die anymore, and they improve, they all improve. There’s less going on with them, they’ll come in and they’re much better. Look, this one had this thing in its throat removed, that’s a big thing.”

 – Jim, father of Chloe, age 13, CPVT


Melanie: James knows I’m the one with all the details, and they both know that Mom has this need, because of my training, to do this, so they back off and let Mom take off with it. I’m on the phone with the pediatrician talking about this. He comes to his father knowing his father doesn’t know this much about it and says, “Dad, could I die from this?” and he didn’t mean from the defect because Walt said, “Well yeah” he goes, “No, from the surgery.” I remember Walt saying to him, “Well that’s why Mom’s working on getting you to Children’s because they have such a success rate at fixing hearts.” And that seemed to satisfy him.

Walter: I basically explained on the whole scale, “Yeah, things can happen, but from what they talked about, the operation was fairly straightforward, it wasn’t as complicated as other surgeries they did, and the chances of success are just really, really high” and that seemed to answer him.

Melanie: So I think he came into it feeling like he was going to be okay.

 – Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery


Something that I think has been so valuable for us as a family and particularly for David is you get a message from all of this that life is not perfect, there are things that go wrong, there’s stuff that gets broken, but there are solutions to the problems, and there are ways to get things fixed. Every one of these trips to Children’s with David, with the older boys—one son had to go through two surgeries for spinal fusions at Children’s, and the other twin son had a skin issue where he had to go in for a number of surgeries, so we’ve just been back and forth there so many times. I think everyone in the family has come away with the message that if something’s wrong, you fix it. So the stress every time you go to Children’s is obviously a fear of the unknown, there’s things that may go wrong, but the reality is that we feel so fortunate to be able to go to that great hospital and get the care that’s available to fix all these problems. I know that there are so many families that are regretfully dealt cards with problems that can’t be fixed. Fortunately with ours, we have been able to fix every single one of them, and so that’s kind of the spirit that I think carves through some of the stress, every time we walk through that front door.

 – Richard, father of David, age 23, TOF