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

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

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

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