What I know now

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

 – Leslie, mother of Margaret, age 2, VSD


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

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

 – Lindsay, mother of Brian, age 2, Heterotaxy


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

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

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

 – Diane, mother of Jake, age 21, HLHS

Dealing with the unknown and living in the now

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

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

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


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

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

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

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


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

 – Diane, mother of Jake, age 21, HLHS

Keeping the faith

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

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

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


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

 – Grace, mother of Austin, age 10, TOF


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

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

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

Getting involved and giving back

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

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


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

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

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


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

 – Jim, father of Chloe, age 13, CPVT


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

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

 – Diane, mother of Jake, age 21, HLHS

Carry on with your life and take care of yourself, too

Take a deep breath. I wish I would have taken a little bit more time for myself, even if it was just a couple of hours one day during the week. I wasn’t thinking about a pedicure or a massage, that was probably the last thing I wanted to do because of the guilt, but even just going to sit somewhere and taking a minute without anyone talking to you, the phone ringing constantly, just checking on the situation. I went through a period where I didn’t answer the phone, I would just let other people. But deep breaths and time for yourself, whether it’s the mom or the dad. Because it’s stressful, I’m not going to sugar coat it. It’s the most or one of the most difficult things you’ll have to endure in your life up until this point.

Knowing how resilient babies are also helps. They can handle it. I didn’t even know how to bathe them, and thinking how fragile they were and then watching the nurses bathe them and just realizing they’re a lot stronger than I thought—they need you, but they’re a lot stronger than you think. They’re resilient and they heal. It’ll get better. It does. I think you have to just go through it. That’s true with a lot of major things in your life. You’re completely capable. You’ll be surprised at what you can handle when you have to. For better or for worse, whatever happens, it’s going to be okay. I know that’s terrible to say—it’s not necessarily the outcome that you may want, but it is going to be okay. I don’t think I would have wanted to know all of the things that were going to happen. I think maybe just that it was going to be okay. He got better. And a lot of them do, that’s why you go to Boston.

 – Lindsay, mother of Brian, age 2, Heterotaxy


I think you have to be very careful that you don’t lose sight of who you are as a person along the way. It can totally consume your life, and I think it did consume my life. For some time, all I focused on was his health and I would spend hours and hours researching things and getting worked up about stuff that probably was never going to happen, and getting really involved with other families who were going through similar things, but then when things weren’t going well for them, it doesn’t go well for you—you go through these emotional rollercoasters and it affects your friendships and your family and you can’t let that happen. Taking time for yourself and taking time for your spouse and your other children, and all of that is equally as important as being there for your child.

So trying to find the balance the best you can with researching, and advocating for your child and becoming a part of the community, if you like, but also not losing sight of your life and what’s important, and just enjoying the moments as a family and not letting it consume you, or let their diagnosis become who they are, because they’re not their diagnosis. I don’t ever want him to be defined by his illness.

 – Amanda, Mother of Carson, age 5, Heterotaxy


The biggest thing that got us through all of this was our faith and the peace that comes with having that faith. I would tell families, “these kinds of stressful situations can break a marriage apart,” and I have told others, “whatever you do, cling to your spouse. Don’t let them separate you, because you need each other more now than you ever will need each other because it is such a hard journey.” I would give them the same advice that I was given in doing their research, because not everybody has the means to travel from the South to Boston and stay for indefinite times, and it’s hard financially, it’s hard if you’re apart, and that they need to do the research and to make the best decision that they can for their family, because every family is different.

 – Donna, mother to Leah, age 10, HLHS


One of the big things they told us in the beginning—and we kind of adhered to it—you’ve got to carry on with your life. Luckily at the time, Grace had closed her business, so we could afford to have her stay at home and take care of Austin. Not everybody can do that. I could go to work, and I did, and I came home. That’s how we did it. Is it for everybody? I don’t know. Hopefully, everybody’s in sync like we were. We had a 14 year old, which her aunt could stay with her, which was good.

 – Scott, father of Austin, age 10, TOF


You can’t let it rule your life. You have to be able to compartmentalize. I have to be able to put this on the back burner and forget about it sometimes, I have to because otherwise I’m not going to be any good to her. There are so many parents that I see on the support groups that are devastated by it. So it’s important for parents to realize that it’s okay not to think about it all the time, that that doesn’t mean they’re not being as protective as they need to. It’s okay to put it on the back burner, it’s okay to be a normal family once in a while and not think about it and not worry about it, and put things away and make the memories. Don’t make that a part of every memory.

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

Ask questions and do your own research

You’re your child’s only advocate. Even though I’m an assertive person, I was nervous with Elizabeth’s original cardiologist. I felt like she didn’t want a lot of questions asked, and if they’re in that situation where they’re with some caregiver or provider who’s not allowing them to ask questions, they need to make a change, because our cardiologist now welcomes questions. He was more than willing to explain it to me in a way that I could understand, so that I could wrap my head around what was going on with Elizabeth. Because even if I couldn’t control it or fix it, at least I knew what was going on. I guess that’s the biggest thing—it goes back to trusting your mother intuition. If you have a bad feeling in your gut, go with it.

Get as much information as you can, and have the best information that you can. Get the best diagnosis possible, because everything flows from that. If you don’t have the right information from the get go, nothing adds up. It’s kind of like building blocks. You have to build on the right diagnosis. And then a lot of it is just information gathering. A lot of things we just lucked into, like my friend just luckily called me, and the receptionist luckily mentioned First Steps—I don’t know that I would have had the mental capacity to dig for information because I was so exhausted. So if there’s someone in your family who is good at gathering information, put them on task. Have them help you dig, because there’s so much out there.

 – Anna, mother of Elizabeth, age 2, VSD


For me, talking, asking questions, the communication was important. The communication does so much and it serves so many purposes, you get your questions answered but you also open up in the process. All of a sudden you don’t feel like one in 100 anymore. You understand that you’re in a pool of millions. Your cardiologist might not say, “Call me whenever you want,” but call them! You have to advocate for yourself, no matter what it is. Remember you’re not the only one, so make sure you find the others. Don’t do it alone, because the strength you can get from others’ experiences is pretty extraordinary.

 – Jessica, mother of Avery, age 2, ASD


Focus on what’s important and trust your doctors. I think there’s a lot of instinct and intuition that comes around too—like if you really feel like something’s not right, then maybe something’s not right. But literally these are the best doctors in the world, so we listened to them, and we were very lucky everything turned out pretty much exactly the way they said it would. So, listen to your doctors, hey know what they’re talking about. Don’t go on the internet.

 – Leslie, mother of Margaret, age 2, VSD


Miranda: My biggest recommendation is for people who have something this big, to definitely get a second opinion to make sure that there’s someone else who’s asking questions, that there might be another question that they might ask that would shed light to the whole situation. And that when you’re making a decision this big for your kid, you can go to sleep at night knowing that you made the best decision you could have. The biggest challenge for me is really trying to figure out what the right thing to do for your kid is in a world that you don’t completely understand, like the medical world, and trying to navigate it. And I never understood before having kids that it’s totally fine to get a second opinion, it’s pretty normal to get a second opinion. For some reason I always thought that was imposing on doctors and so just letting people know how normal it is to get a second opinion.

Allen: Planning is really useful, just planning everything out. Like, the logistics of the surgery and then the hospital stay, there’s a lot to think about, and the more you can plan that stuff out in advance—just so you don’t have to think about it when you’re stressed out. Because your mind is going to be on other things when you’re at the hospital. So get all your ducks in a row. Make sure you’ve got everything planned out so you don’t have other anxieties like, “Oh, did I remember to do this?” or “Do we need to find a place to stay?” or “What are we going to do for the next 48 hours while our kid’s recovering?” You want to take all those things off the table completely.

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


Alice: Do your research with hospitals. Thankfully there’s a big movement towards transparency in pediatric cardiac programs across the country, so I would start there. If your child’s going to need surgery, look into who’s doing it, what hospital, what are their mortality rates, what are the surgeons’ rates—there’s just so many components that go into picking a good program, and that really is one thing that you do have control of as a parent, but you don’t even notice that you do have a say in it, I guess. Really that’s the biggest way that your child’s quality of life is going to be affected afterwards. If a surgery goes well with minimal complications, then they’re going to do so much better. It doesn’t matter how dedicated you are as a parent, if you go someplace and something happens, you can’t fix that, you can’t take it back afterwards.

Doing your research, finding a good support group for yourself so that you can cope with things, but then also for how you deal with your kid’s medical issues. For example, it took us three years but we finally feel like we have a medical team in place for Zach. Zach’s cardiologist is our team captain, and we had to see several cardiologists before we found one that wanted to take on that role, that wanted to be the go-between between the pediatrician, the pulmonologist, and the neurologist.

Adam: I think on our end—especially with us being shocked and the doctors saying, “Pick one or two hospitals”—when you’re in this situation, and the doctors sound smart and confident and they know what they’re doing, to realize you can say no. And to ask for a second opinion and don’t be afraid that you’re going to offend them because it’s your right as a parent. We didn’t really start doing that until the six month hospital stay, and that’s how we actually got to Boston, because one of the second opinions that we got was from a cardiologist at Children’s. So then we started to make a relationship with her and that’s what brought us up here. That’s one thing that is important to remember for people who are going through this, especially if they don’t have any medical training or schooling or anything like that.

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


I think for those that don’t have that background or have access to family, you need to just ask questions. A lot of times with Amelia, with both surgeries, people would talk to me and not necessarily to my husband and I, a couple of times I did have to kind of say, “Put this in his terms,” especially if they knew I had a medical background. And my husband is not as vocal as I am in terms of her medical care, and I would say, “If you don’t understand anything, you need to make them explain it to you” and he was like, “Well you could explain it to me,” and I was like, “I could, but their job is to educate, to educate the parents, to make sure they understand,” and I think for someone who doesn’t have that knowledge, don’t settle, don’t just have a diagnosis thrown at you or have someone say to you, “your child needs this test.” Well, “why do they need that test?” Just keep pushing until you understand it, even when you’re sitting there in the chair, take notes or record it because there’s just so much information thrown at you all the time, it gets very overwhelming and you forget that things are said. Ask for copies of procedures and ask for information, so that you can always go home and read it later on.

The internet is great and it’s also scary as all heck. You can find appropriate information, but then you find information that leads you to think that your kid is the only one that has this and that they’re not going to survive and that the odds are against them. The hospital is great, they do have the resources to provide, to help educate, but I think just keep questioning it and keep asking for explanations of things until you fully understand it. You deserve to understand it, it’s your kid going through it. You need to know what’s coming, what you’re going through, and have any questions answered.

 – Roxanne, mother of Amelia, age 7, Dextrocardia


I think the top two pieces of advice are, don’t be afraid to ask questions to any professionals involved, whether you think you may offend the doctor or you need to know every bit of information and if you have any questions to make sure that you put them out there. I think that that’s definitely number one, and number two is that if you have family and friends, you need to rely on that support system and not be afraid to ask for help because people are more willing to help than you may think you’re bothering people by asking for help, but more often than not, people want to give that help to you but sometimes don’t know how. So if you just ask, people are willing to help.

 – Abigail, mother of Johnny, age 9, HLHS

You’re not alone in this

Nick: I know for me it was, “don’t think that you’re in it alone.” When we first came here, you feel like you’re here alone because, I mean I’ve been to Boston a million and three times and never stepped foot in Boston Children’s. So it was almost like a new place for me, but then some of the people we’ve met from day one—that’s why we’ve had a good support group. We’ve made friends at the hotel, we’ve made friends here in the hospital, we’ve had nurses that have looked after her from day one and who still look out for her, just asking, “How is she?” looking at her growth, how we are, how we’re coping with it. So I would basically say that anybody going through that, sit down in the family rooms, the chapel, wherever, have conversations.

Shana: Talk about it. Don’t keep it inside because that’s worse. Ask questions and talk about it. Don’t hide anything, because if you hide it then you’re going to go through it alone. The more we talked, the easier it got.

Nick: Yeah. Because I mean you learn so much from other people’s experiences. You learn some of the things that they did to cope, which made us say, “Okay, well maybe we need to try that to see if that helps us.” Everybody’s different, there’s always that little bit of something that you get from somebody that just helps you get through it, and even if it’s just to get through today.

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


Try and talk to people. Initially, I wasn’t talking about my feelings and it kind of backfired and it all came crashing down one day. Utilize the support that you have within your family, you’re never alone. There’s always somebody who’s either going through it with you or has gone through it. I think if you’re getting care at Boston Children’s Hospital, you’re in the right place. I don’t have any one little slogan or any couple sentences that I could kind of sum up everything. I think ultimately you are amazed as a mother the strength that you have that you probably never knew you had until you have to go through it. And it’s eye-opening what you can do, and the advocate that you can be for your child.

 – Roxanne, mother of Amelia, age 7, Dextrocardia


I would say “Don’t lose hope.” We didn’t find out until after Austin was born, but I talked to some heart moms who were told of their child’s heart defect when they were pregnant and they were highly advised that they should terminate. And they have happy, thriving children, thank God. My biggest thing is just have hope and so much more can be done now, than 10, 20 years ago. Reach out, get support from other heart families, make the bonds with other heart moms because that’s truly what will really get you through it. It makes the journey a whole lot easier.

 – Grace, mother of Austin, age 10, TOF


I would say my advice would be to do what I didn’t do. Which is I didn’t ask for help. I would reach out. My advice would be reach out and ask for help, and I would include in that, talk to your care team, talk to your doctor, let them know that you’re really struggling. You never want to do that with your doctor or your care team, people want to make it look like we’ve got it all together, and then if you look like you have it all together, they treat you like you have it all together. And I know I fell into that category because both of us are educated, pretty outspoken, but we didn’t walk in their door looking like we were falling apart, and so they assumed that we were doing okay. I would say reach out and ask for help, and I would also say reach out to whatever support system you’ve got, whether it’s family or friends. I just didn’t really do that. I think we tried very much to just sort of do it on our own and I don’t think that’s a good way to go necessarily. I really don’t.

And I think the other thing I would say, which I also didn’t do at the time, is certainly seek out some mental health support. I definitely did not do that, and I wasn’t on anxiety medication until years later, and I look back and say “Gosh I can’t believe I stuck it out then.” I think you’ve just got to reach out. I think the isolation people feel, and the not wanting anybody to think that you can’t handle this, drives some people, and it did for me, to be very private and not share what you’re really going through. And I think that that’s dangerous. I think, you know, maybe things didn’t need to be as hard on us, maybe things didn’t need to be as hard on Matt. I don’t know, hindsight is 20-20, but that would be my recommendation.

 – Diane, mother of Jake, age 21, HLHS

Advocate for your child

I would suggest to parents to really feel comfortable advocating for their kid. And that they know their kids the best, and if they feel like something is happening that isn’t in the best interest of the kid or could be in the best interest of the kid, just speak up about it to any number of people who could respond. For us, they called us two days before the surgery and asked if they could move the surgery up a day to an afternoon time slot. I said, “Well an afternoon time slot doesn’t really work for us because then we have this kid who doesn’t understand the concept of surgery, and we’re asking her to not eat during nine waking hours. I just can’t imagine that.” And they said, “Well you’re actually scheduled for an afternoon time slot on Wednesday too,” and I was like “What??” because we had specifically asked the surgeon about that. So we just really went to bat for her and said, “This really doesn’t make a lot of sense for us to have an afternoon time slot, and here’s why. I totally understand if there’s a tiny baby who needs to have surgery first. But if this is just a scheduling thing, could you help us out?” And ultimately they did. And I think things like that—just not being afraid to ask a question. They may say no, but just not being afraid to ask the question to really advocate for your kid is huge.

 – Miranda, mother of Serena, age 2, ASD


The importance of being an advocate for your child is something that’s important to know both at school and with providers. Initially, I frankly didn’t even consider it a possibility to ask the school to have every adult in the building CPR trained, but they did it. Now I think, hopefully she won’t ever need that, but potentially that training would be helpful those adults in some other situations.

I think you do have to have good information to share with people, and be an advocate either for what your child needs, or for what they don’t need. It’s not necessary for my child to be excluded from all activities. In the hospital setting, it’s definitely important to, you as the parent are the one who is there consistently and as much as the care providers try to do their best, there are lots of opportunities for mistakes and problems to arise. Like one time when Willow was in the hospital a nurse came in and said she needed to have a medication, but she had already had it. You have to be on top of things.

For people who are going into the hospital with a child, you need to be prepared to advocate for your child and what they need, and also to help keep track of things because mistakes do happen, especially when the shift changes. If you’re in a hospital in a stressful situation and especially sleeping in the hospital, you’re not going to get much rest. It would be good to have a notebook or something where you’re kind of keeping track of things or writing down questions, that would be helpful for parents.

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


Be an advocate for your child. Children’s is an exceptional place and they saved Austin, and they save children every day, but whether it’s Children’s or your local hospital, or your local pediatrician’s office, moms know their child best and you’ve got to advocate. Even at Children’s I’ve spoken up, you know your child best. There are the doctors and nurses, but there’s still something to be said for a mom’s gut feeling. You need to speak up and not be afraid to have some input, and advocate for the child.

 – Grace, mother of Austin, age 10, TOF


I can’t advise anybody because when something like this happens to you, you basically don’t know what’s going to happen when you wake up in the morning. You don’t know how you’re going to feel or how you’re going to cope with those day’s events or even what the day’s events are going to be. But I would just say take every small step one step at a time, cliché as it sounds. Listen to your doctors, listen to the people who know what they’re talking about. If you feel that your child isn’t getting what they need, speak up. Don’t be shy to speak up, don’t think you’re going to offend a doctor or a nurse.

The other thing I would say is remember who it’s about. It’s not about you. Your job is to look after your child. That’s the agreement you made when you decided to have this child—that you would look after this child and do the best you can for them. But still look after yourself, look after your family, make time for other members of your family, make time for your friends.

If you have friends, and they don’t reach out to you, it’s probably because they don’t know what to say. You can reach out to them, it’s fine. Keep your relationships strong, don’t make it become everything in your life, because your life will—believe it or not—move on eventually. Initially all you can see is that day, that hour, that minute, how are you going to get through that? How are you going to get through the next one? It’s almost like grief, it’s very similar to grief. Eventually, you don’t forget the person that died or you don’t forget the person that’s been affected or the event that happened, but eventually you realize that you have to move on a little bit, you have to be involved in the world, in your job, with your friends, with your other family members.

But I would never dream of giving anybody advice on what to do. Do what you know you have to do. And guilt is a huge part. Guilt is a huge part of it. Did something you do cause this? It’s a genetic disorder, no is the answer to that. Take it one step at a time. Take advice, heed advice, but don’t be a yes man.

 – Jim, father of Chloe, age 13, CPVT


Dad: The doctors and surgeons won’t have all the answers. In our situation, we had to make the decisions on what we thought was the best solution. That was a little scary that parents are faced with that. There’s all sorts of heart conditions or other conditions and ultimately you have to weigh those pros and cons and make a choice. In our situation, we made a choice that didn’t work. I don’t know if we made the wrong choice. But don’t beat yourself up on that stuff, there is no perfect answer. This is all still groundbreaking stuff they are working on and we are all sort of data points in the research.

But you have to pick the solution you think is best based on your risk and comfort level. So just be prepared to do a little research and make a decision you have to live with and your child has to. They are going to guide you as best as possible and they did do that, and they are great with that. But sometimes you have to make that final call and you just have to go with it like anything else. Other than that, you couldn’t be at a better place. For the most part it goes like clockwork. During surgery they communicate to you very often. The surgeon comes and gets you personally when things are done and everything is handled very well.

 – Paul, father of Sierra, age 13, Valve disease


Just be kind to yourself and use your supports, whatever it is. Don’t go dark if you can help it. Don’t dig into the internet too hard, it’s scary. Rely on your doctors, they’re wonderful. And if you don’t like your care, I’d say switch it.

 – Amy, mother of Rebecca, age 19, ARVD


I think knowing that time does heal is really helpful, and the intense stress of being in a hospital and having hospitalizations and having a sick kid just—this too shall pass. I feel like you just have to hold on to that. There were moments when we were in the hospital together that were wonderful too in a way because I was a fully captive audience and we were really together. I don’t know if I can offer much advice to people, it’s just—things pass, they get better, you go through a new normal, it takes a few months to adjust, and it makes you not sweat the smaller stuff. And be more organized than I am. Just try to be organized and know that navigating insurance is hard.

 – Amy, mother of Rebecca, age 19, ARVD


I would definitely say use a therapist. Family therapy—you know, we never really did it. My husband and I did it with Gabriel, but then it’s really hard on the other children depending on their ages and stuff. You have to be aware, I mean I always think about what, how much didn’t the other two kids tell us because they thought we had enough on our plate already. I think people need to be aware that it does impact the family.

Don’t stay at the hospital for 5 weeks. You just got to take care of yourself. They say that whether you’ve got three totally normal kids—because we all have stresses and issues, so I would just say that parents have to take care of themselves and they have to take care of their own relationship so that they can be good caretakers for the other siblings and the child—they just have to. And you know, I think we’re all guilty of it, but probably typically it falls on the mom’s shoulders—we’ll often not take time for ourselves because we’re too busy taking care of that child. And so I would say, that’s a big thing. And it involves physical exercise and or mediation, and or yoga. That’s what I would say. And the therapy thing.

I’d probably just say—it’s hard. I mean, it will be challenging some times more than others, but, that support is available and you should take advantage of it and whether, you know talk therapy for the child or therapy for the family in dealing with it.

 – Louisa, mother of Gabriel, age 20, HLHS


I think that if you think about that stuff all of the time and perseverate on it, you’re going to make yourself crazy, it’s  going to define your life, and I don’t think it’s good for you or your kid.

 – Diane, mother of Jake, age 21, HLHS



Jake’s cardiologist wanted him to come in once a month and he said “Well that’s my choice.” And it is, you know? But that’s hard. I wanted to say like, “I took you this far, don’t you screw it up now.” I did kind of say something to that effect actually. But how do you navigate that? And how do you not obsess about it? How do I really literally let go and say “He’s going to make his own decisions and I’m going to have to live with that.” I may not like all his decisions, and that one’s really hard for me. And yeah, that’s probably the biggest one that I’d want to ask people. You know, how do I really let them be in charge? And I guess I’d also just sort of logistically wonder how to families-I mean, I’ve been in Jake’s-every exam room, every hospital room, I’ve stepped out occasionally, if there’s something really private going on I’ll step out but for the most part he never asks me to leave, and I don’t leave. …How do I let go a little bit? I know it’s really important and I have no clue how to do it. No clue. And I think that that frustrates Jake, and I don’t know, you might even want to probe some of the questions with him, but I think that he gets very frustrated with me for being too worried, too anxious, too all over him and probably not giving him as much independence as I should. I don’t know how to do it.

Advice for other families—other than do your best to get through it, keep a sense of humor, work on your marriage because it’s going to be strained, and that’s really hard. Seek out support, as I mentioned, for the whole family. Not just for the child and yourself but for the whole family. Get as educated as you can, that was something that we didn’t have the benefit of because there was no internet, people really can get educated. There’s lots of resources for families to know what questions they should ask, Sisters by Heart does a lot of that and I’m sure a lot of organizations do it for other CHD. There’s power in being educated, I really believe that, and I really felt very ignorant going through the whole process. There were biologists, or cardiologists, and there weren’t any resources. So I would say that would be my advice. And just be kind to yourself.

 – Diane, mother of Jake, age 21, HLHS


Courtney: My advice to these families is to not hold it in—it’s hard to talk to your friends who have no experience with something like this. It’s a lot easier to talk to other people who have, and it’s probably really important to talk about it some way or another. You can’t just carry it around with you and not talk about it. No one ever said to us after an appointment or during an appointment or at any time that that was an option….I don’t think I would call it a necessity, but I think it would have been very helpful at the first stages of this.

Richard: I think if someone had said, “Would you like to talk with somebody?” or “Would you like to talk with families that are going through what you’re going through?” or-

Courtney: I would have preferred them to have said, “Okay you’re going to have your pre-op next week, you’re going to have this, you’re going to have that, we’d also like you to come in and meet with Dr. So-and-so or whoever it is, Ms. So-and-so to talk about the process” and just have it as a part of the whole situation, not a one off kind of over here, “Oh, do you feel like you need to talk to someone?” because if it’s presented like that then your expectations are different, your levels of anxiety are different I think. I think it would be great if it was just all part of the whole program. “You’re gonna get your blood pressure taken, and you’re gonna go talk to this person.”

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

Challenges of coping with complications and a medically complex child

Our experience in Boston was a learning experience and it taught me to ask questions, even if they are stupid questions—sometimes stupid questions can lead to smarter questions. So when Elizabeth had to have ear tubes done over the summer, I told the hospital in our home state, “in Boston they let you stay with your baby until you fall asleep. And in Boston there’s a pediatric anesthesiologist.” That was important to me. But they didn’t have a pediatric anesthesiologist here, so I booked an appointment at different hospital to do the ear tubes. I met with the ENT at the new hospital. They had a pediatric anesthesiologist, pediatric nurse anesthetist, and a pediatric anesthesiology nurse in the surgery, in a five minute surgery. And the ENT was like, “It’s not that anything’s wrong with Elizabeth’s heart, but we’re ready.” I guess what I’ve learned is just ask questions and be an advocate.

 – Anna, mother of Elizabeth, age 2, VSD


The first couple of years, the challenges that he’s had are not really cardiac related, they’re more heterotaxy related. He has kind of a weak lung-sinus-ear system. He gets really stagnant fluid in his lungs and ears, and that has definitely played into recoveries from surgeries. And he was super prone to ear infections, sinus infections, upper respiratory infections. Up until last winter, winters were challenging because he would get sick and then he couldn’t get over it. He would have a lot of upper respiratory infections. Aside from that, he’s done really well actually. With school, you would assume he would get so sick being around all these kids, but he really hasn’t. I think balancing good hand washing and sheltering him a bit, but still allowing him to be around other kids and get sick and touch germs, it’s actually been good. I think it’s helped build his immune system and he’s done well.

 – Amanda, Mother of Carson, age 5, Heterotaxy


Her recent pneumonia is when the needle fear started. She had lost a lot of weight, and wasn’t eating and drinking so she had to have IVs. She was so sick and lethargic that she couldn’t really fight much, but they used this stuff that numbs the area so it doesn’t hurt, and they talked to her and explained what was going on. And they gave her options, “Would you like to have this done? Would you like to be the one to take this off?” They let her have options and it helped her feel like she was making the decision.

With a child who has a heart thing, as a parent, it seems more intense when they’re sick. But one day when she was in there she goes, “I prayed that I wasn’t going to have to have any more needles and God heard my prayers, and what he gave me instead was the treasure chest.” That’s where they got to pick toys. So I think children have a great way of making situations that aren’t the most desirable into something as good as possible.

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


When Austin was four he was getting low grade fevers that just would come and go. I took him to the ER, they said it was just a virus. We went back to the ER and they thought I was crazy because it’s just a fever. And I said, “But every night he’s been getting it.” They did a blood culture, said it’s probably just a virus, and sent us home. The next night, the ER doctors called and said, “There’s something growing on the culture. We need you to bring him back in.” I said, “Okay, when?” And he said, “Now.” So we threw a bag together, got him up, and went off. We found out that he had endocarditis—an infection that settles and attaches itself in the heart. He could have died from it. He had to have six weeks of IV antibiotics which was really hard for him.

 – Grace, mother of Austin, age 10, TOF


When she was about three and a half, she had pneumonia. A couple months after the pneumonia, she coughed up something that we looked at and thought, “This is really weird, what is this?” I had asked one of the EMTs that I worked with and he said, “It’s probably a mucus plug.” But when we talked about it to her cardiologist, he said “If this ever happens again, save it and let me know.” That’s when he told us about this condition called plastic bronchitis. A year or so later she did it again and then it started happening more frequently. We’re in the medical field, so science is very interesting to us. We started using a toothpick to measure it so that we could keep track of the sizes and frequency. They were becoming more and more prevalent and some of them were really hard for her to get up. That sent us back to Boston another time or two for heart caths, just trying to see if they could figure it out. It’s such a rare thing, that there wasn’t a whole lot of information on it.

After she had had a year of the plastic bronchitis and a year of coughing up blood, they wanted to do a transplant evaluation on her. We went in for an evaluation and they also started her on some medications. She hasn’t had any issues since starting the medication, so whether it’s coincidence or the extra diuretic has helped or he changed her Aspirin too—if it helped with it or it’s just coincidence we won’t know until if and when it happens again. But right now her plastic bronchitis seems to have taken a backseat and she’s doing okay. And she has not had a transplant. My husband was not ready to list her, so we waited. Now two and a half years later she’s been doing fantastic. It’s been two years since her last episode of plastic bronchitis, and we’ve backed off on some of the respiratory medicines in the hopes that maybe it’s gone.

 – Donna, mother of Leah, age 10, HLHS


He had the third surgery just before his 4th birthday. And that was supposed to be the last surgery. And then it wasn’t. Then he developed PLE (protein-losing enteropathy). I’m not sure you’re always told all the potential complications because you’d be worrying, “oh my God, he’s going to develop this, maybe he’s going to need another surgery,” but the down side is not knowing and thinking everything was swell for 10 years, and then all of a sudden it isn’t.

It really wasn’t until after his surgery for PLE that he came home with just a slew of meds. And he was angry, because that surgery, he was almost 13, it was totally unexpected. He’d been having migraines and he was looking bloated, but he was putting on weight, he was growing, he was 12, pre-pubescent. He went in for his routine 6 month cardiology check-up and met with the nurse practitioner first. She left the room and then she came back with his cardiologist and that’s when it was like, “This child definitely has PLE.” They did a test and confirmed it. That was on a Monday. Our cardiologist called us that night and basically said that he had to have surgery, and he had surgery that Thursday. That’s how quick it was.

Gabriel was angry. Because here he was a teenager and it was spring break, and he was just angry. We were blindsided. I think he was scared, I remember we met with the surgeon and we had never met him because another doctor had done all three surgeries, and I remember Gabriel asking him, “do you have good results?” It was the funniest question. He was in for five weeks. He was back and forth—his sodium was off, his potassium was off, he was restricted on fluids, it was really hard.

 – Louisa, mother of Gabriel, age 20, HLHS


For him, and for our family, the bigger issue from the age of two forward was not heart, it was the asthma. The asthma has been an incredibly controlling aspect of our life. Literally, the joke at work for me is that I don’t take vacation. I use vacation time every year, but the reason I don’t take vacations is because anything we ever planned had to be cancelled. We’ve missed family events and vacations. Jake would get sick, and we couldn’t travel when he got sick. I felt badly about that for both Matt and Jake. They don’t know any different, so I’m not sure they would identify that as a loss, but I do. We’ve never been to Disney World for example, the “be-all-end-all”. Things that most families do, we never did. I think you’ve just got to reach out. The isolation people feel, and the not wanting anybody to think that you can’t handle this, drives some people, and it did for me, to be very private and not share what you’re really going through. And I think that that’s dangerous. Maybe things didn’t need to be as hard on us but hindsight is 20-20. Reaching out to others when times are tough would be my recommendation.

 – Diane, mother of Jake, age 21, HLHS


Courtney: In addition to the Tetralogy of Fallot, which is often the case, his midline development was impacted. What that means sometimes is a Cleft Palate for some kids, he had hypospadias. At the end of his freshman year, he told us that he’d been having a pain in his side. We took him to his pediatrician, set him up for an x-ray and it was a kidney issue, so he had robotic surgery at Children’s. They had to un-twist the connection leading the kidney to the bladder and he hasn’t had any pain since. But it manifests itself at puberty—he could have had it all his life, they think he probably did. Because of his life as a college student, one doctor said, “Do you drink beer, David? Because if you drink beer, your kidney is having a hard time processing it. It’s causing pressure.”

Richard: One kidney was working 100%, the other was at 20%. And when he was trying to keep up, that was when he was having the discomfort. So I mean they could have just removed the kidney but his doctor said if you’ve got two good kidneys, you should take care of them. So we went ahead with that surgery. So once again back to Children’s and back to full anesthesia.

Courtney: We had surgery, he was fine, in fact he was better than fine, he thought he was 100%. Of course there’s no stitches or anything because it’s all robotic, and just little teeny-tiny holes that they go in, and he came home that day. At 11 o’clock that night came into our room in excruciating pain. We rushed back to the emergency room at Children’s, he’s in all night on morphine and he had an ultrasound, the girl said it looked like he was at the bottom of a rugby pile, that he was just loaded with blood clots, he was just stuffed with them. But that was the most excruciating pain I’ve ever seen him in, and it didn’t have anything to do with his heart. So that was really hard.

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

Challenges of having a child with with CHD

Hearing that we were part of this one percent of children born with a heart condition was so shocking to us. You never think you’re going to be that one in 100. I think that was sort of the biggest challenge for me, was moving from this pool of, “Oh no, does she have an ear infection, is she teething,” and having that be a big deal and going to the pediatrician for that, to going to sitting in a cardiologists office. Now you’ve leaped into a different pool of kids who have a heart condition and for me that was really difficult. What did I do wrong? Did I do something during my pregnancy? I thought I did everything right. I breast fed for a full year, I did everything by the book. How did this happen? It’s hard not to question yourself in that way. But then you’re in this pool of kids and you’re dealing with these specialists who for them, it’s their normal.

 – Jessica, mother of Avery, age 2, ASD


The first thing in my mind would be just getting answers. The first challenge was getting a diagnosis and getting answers. That felt like a huge challenge. And then, once we had that, the second challenge was just the waiting game and the uncertainty. Once we had the answers and we had the diagnosis when she was three months old, it was the uncertainty of knowing that if she hadn’t gained half an ounce today, she could be in heart failure again. Going in and out of heart failure* saying, “Are we going to have surgery? Are we not going to have surgery?” Part of it is just, I’m a planner, I always have a plan, and there could be no plan. There was nothing that I could do to change it. And that was huge. That’s hard to feel so out of control.

 – Anna, mother of Elizabeth, age 2, VSD


I think it would just be the feeling of being so alone in it and not having resources—not having a book I could consult, like “Okay, Zach has all of these issues, where’s my textbook on it? Where’s my road map for what to do?” Just feeling alone in terms of how to best help him and also finding people who could even begin to relate or understand what we go through as parents too. Even just between us, we handle things so differently that we’ve been in the same situation but you can still feel very lonely because you just don’t know what to do.

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


The greatest challenge I think is just accepting it all, initially. Accepting that she had such a complex heart. I questioned for a long time why it happened   to her. I had a lot of guilt that it was something that I had done in my pregnancy, even though I was told repeatedly it was just the way that her heart developed. I think it’s been a lot of challenges instead of just one particular thing. Things like accepting what was going on, then the challenges of just trying to be ahead of the game, anticipating what’s going on and when she’ll need to go back. Also being her advocate because she can’t be her own advocate just yet.

Day-to-day, there’s still worry even though she’s been through two surgeries and her doctor is telling me that she’s at a really good place, she’s healthy. I think it’s fear too—not knowing what the future holds, hoping that she’ll never need a heart transplant or that she won’t need another surgery, that she won’t need another surgery after that surgery. It’s hard to put into words exactly what the challenges are, it changes. When we got closer to the surgery, it was the challenge of getting through it, emotionally, mentally, being strong for her and then the challenge of day-to-day after that through her recovery.

A lot of times, luckily, it’s not at the forefront of my mind that she’s got all these heart issues, because she acts like a normal kid, but the challenge again is just accepting what the future could hold and not knowing for sure what avenue we could go down again with her.

 – Roxanne, mother of Amelia, age 7, Dextrocardia


The most challenging issue is the uncertainty about any time there could be an emergency. I think it has helped to try to be as prepared as possible, to be CPR* trained and to try to be as prepared as we can so friends she goes over to their house, their parents are aware and are CPR trained.

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


There’s one conversation we’re going to have to have, but I’m not sure how we’re going to do it. It’s about the fact that I have the Lupus antibody* that she has, and the complete heart block. I think one day we might have to have that conversation. I’m wondering if that’s going to be a hard conversation, but for the most part, it’s really just the fear of having another operation. I will say, she ended up having an IV in her head at one point, and that was a hard thing. I look at the pictures and tear up. I think I’m on this side where I’m so much more optimistic, but it’s a hard thing to go through, and I don’t want to be too light on that.

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


The greatest challenges were the surgeries for sure, the more invasive procedures and getting through and trying to stay as positive as possible. We’ve been so fortunate that he’s been a healthy kid that sometimes we almost forget at this point. Every once in a while I get knocked back into reality and we’ll get a little panicked thinking about if the next shoe is going to drop kind of thing, but I think we’ve been fortunate that life has been kind of normal. It breaks our hearts when we see that he has a hard time keeping up with other kids, and sometimes that affects his relationships. But it’s not something that we dwell on every day, but as a parent, it’s very hard.

 – Abigail, mother of Johnny, age 9, HLHS


The biggest challenge is the unknown and knowing that things could change on a dime. God willing, they’ll just continue to go well. I remember the first time we were up at Children’s, talking to doctor and my husband finally asked the question, he said “What does this mean? The longevity of his life, how old is he going to live to?” And the doctor looked at him and said, “Married with children.” Which was great to hear.

I remember many, many times when Austin was a baby being told, “He’s a very sick boy. He has a very life threatening heart defect.” It’s been repaired, but my husband and I both know that he needs lifelong cardiac care. His heart is still very different from what most babies are born with. So that’s probably the biggest issue. In life in general, there are no promises. Anything can happen and you don’t take things for granted. But there’s that extra sense of, you just hope that he continues to thrive the way he has been. He’s an all-star on his little league team, he played last night and won. He was slamming the ball, he was pitching it, mouths were dropped because he’s this peanut on the mound and he’s throwing the ball faster than a kid twice his size. We just went to the beach for vacation, and he’s out on the golf course with my husband playing 18 holes of golf. Sometimes playing tennis with my husband. He’s just a remarkable child that loves life and he’s just truly inspiring.

 – Grace, mother of Austin, age 10, TOF


It’s hard to explain to people that my 11 year old is in heart failure. Not congestive, but essentially she’s in heart failure. She doesn’t look like it, but she is, and it’s never going to go away. You can’t think that the myectomy* completely fixed it. I had so many people that would come up to me after her procedure thinking that she was fixed and healed, but that’s not the way it works. And as she’s this age, she’s getting tougher about things. She wants to push herself more and she wants to do more and she gets very frustrated with me because it’s typically me that’s doing the reminding or saying no. I’m sure there are days that she doesn’t really like me. I think overall I’m still good in her book, but she has her moments where I am not the top person on her list.

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


The biggest challenge was that it was not something that we ever expected, because no person would. Then you have to face what happened to you and people come up to you and say, “You’re very brave, I don’t know how you could have done that,” and I want to say to them, “Nobody knocked on my door and said ‘Do you want to do this?’ I was never given a choice.” None of us were given a choice, it just happened to us. And as a matter of being brave, nobody’s brave,  it’s not “brave”—you have to deal with what’s happening as it’s happening, because it’s not about you, it’s about your daughter, who it is actually happening to. And that’s a big challenge to keep in perspective—how it’s affecting you, but you have to almost step away from that a little bit because my job isn’t to worry about me, it’s to worry about her.

When we were in the Pediatric ICU, one nurse said to me, “You have to sleep at some point, because if you don’t sleep, you can’t look after Chloe,” which is terribly cliché, but you’re like, “Well if I sleep, something might go wrong.” But I’m not treating her, I’m just sitting there. So if something does go wrong, the people who can help her are awake and they’re there. So you have to let go a little bit. As a parent you’re protective, but you have to let other people who are more qualified than you to actually deal with the situation.

People’s reactions to us are a challenge sometimes. We live in the small town, so sometimes people know us when we don’t know who they are. After this happened to Chloe, there was a lot of media attention about her, so more people knew who we were. In the early days, we’d be walking around the supermarket and people would stop you and start asking questions. I had one lady who came up to me and said, “Oh you know I think you’re wrong, she didn’t have a cardiac arrest. Look at her, she looks great!” So people will say stupid things, and that was a bit of a challenge. People would approach my wife about it, and she’d get mad. And I’d say, “People only mean well. They just don’t know what to say a lot of the time, so they’ll say something. You may think it’s stupid what they say, but people just mean well.” People are not being malicious—even the lady who said “I think you’re wrong” was just trying to make us feel better.

 – Jim, father of Chloe, age 13, CPVT


The greatest challenge is knowing where the limits are. Knowing what she can and she can’t do, how seriously we take things, how not seriously we take things, that’s definitely the hardest thing. Do we let her go away to college? Nobody knows the answers to these things. We have guidelines, but it’s that not knowing, not knowing what’s going to happen, not knowing if we’re doing the right things. That’s super scary too. If there’re decisions to be made, I don’t know if we’ve made the right decisions.

 – Amy, mother of Rebecca, age 19, ARVD


You feel like you’re alone in this, and even though James doesn’t have to come back to see his cardiologist again, I will be emailing her and telling her if she wants to continue sending families our way we are more than happy to continue talking with them, because it’s very positive for me to talk with the families. You feel like you’re all alone and that you’re the only one going through this. Especially, I think with the older kids. If you go on the ward, there’re babies and young children everywhere that are having cardiac repairs done, but not so much in the older kids. Also especially when you go from a kid that you thought was completely healthy to having a potentially lethal heart condition, your world goes upside down. We had this vibrant, athletic kid who now could drop dead, and you feel alone. Even on the ward we didn’t have much in common with anybody else, because it was mostly little kids, and I think that is hard for families too.

 – Melanie, mother of James, age 20, Anomalous Coronary Artery


He’ll complain about having to take the meds. Every now and then he’ll say, “I’m going to die young anyhow.” I try to let that stuff go in one ear and out the other because I think as it is, I’ve been a bit of an enabler. I’d probably just say—it’s hard. I mean, it will be challenging some times more than others, but support is available and you should take advantage of it and whether it’s talk therapy for the child or therapy for the family in dealing with it.

 – Louisa, mother of Gabriel, age 20, HLHS


One of the hardest challenges has not been the medical for me, but the emotional, social, academic stuff that Jake has faced. And trying to strike a balance between acknowledging his struggles, and that there are very legitimate, concrete reasons that he is struggling—his teachers at school called him lazy. He’s not lazy, that’s not what it was about. Sure he has lazy days, we all do, but that’s not why he was struggling in school, it never has been. So acknowledging his struggles without letting him sit there and use it as an excuse. Trying to strike that balance has been really hard. I think most of the time we do it pretty well, but there are other times when we don’t.

His transition to college is probably his most recent one that I’m still focused on. That first semester in college, I made a conscious decision to let him sink or swim academically, and he sunk like an absolute rock. I will never forget the image of him sitting at the dining room table as he got his grades and found that out, and being so devastated for him because it was happening and also because I know that it’s because of his half a heart and the things that go with that. It wasn’t lack of effort, it was that he’s different. He is. But at the same time, knowing I couldn’t let him use that as an excuse, and I had to not let him wallow. It was a very sad, difficult period for us and I think we worked really hard at pushing him to take responsibility and fix it and make it right, while also acknowledging that we understand why it happened. That’s a pretty tricky balance to strike.

 – Diane, mother of Jake, age 21, HLHS


We’re fairly social people now that we’re 50, we have lots of friends and we do lots of fun things. We joke we had no friends then. There was a bagel shop a town over and we would go over there at eight o’clock at night, right before they closed with the babies, because they would clean, and there was no one else in there. We sat and had a cup of coffee and a bagel. For four to five years that was all of our social life. But it worked, because Jake really didn’t get sick, if he got sick it was really infrequently. That was kind of the sacrifice that we made to keep him well. If someone would come over to look at the baby, we’d just run out of there. So that was a challenge.

There’s the physical challenge of just getting them through it and making the sacrifices that you have to make, and of course we’re happy to do it. And watching him, emotionally watching this kid go through what he goes through, like all parents of sick kids do. So there’s that. But there’s also things like—Jake’s illness hurt us financially, it set us back quite a bit. So there’s the emotional part of watching your sons, one watch it and one go through it, it’s terrible, you lose a lot of sleep. And then there’s the kind of nuts and bolts part of it, which is, you don’t have any vacation and you don’t have many friends and you don’t have any money, but you have a child that’s getting better. That supersedes everything. So as far as the biggest challenge, above and beyond I think for us would be physically and then emotionally it’s a haul.

 – Bill, father of Jake, age 21, HLHS


For David and for us as parents, the challenge is always getting the reality check that he’s not like everybody else. There have been conversations about drinking or marijuana or his diet or exercise is one. He has to live a heart-healthy lifestyle among other things, so for us it’s been the ongoing challenge is just not losing sight of that. It’s so easy to become overconfident, because I mean when you see him he looks so healthy and you’d never know.

 – Richard, father of David, age 23, TOF