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