One thing that helped me was a funny e-mail I got from someone saying, “This will just be a part of the rich history of a little girl. And it will just make her stronger and more self-confident, and more kids now-a-days could use that.” I think it was the first moment that I felt like something positive could come out of this, and it was sort of awakening to me in that way. Sort of recalibrating and thinking “Oh yeah, this is going to be big. This is-you know, she’s going to have done this at age two. We’re going to remind her, she may not remember it, but we’re going to shape this memory for her and we’re going to make sure she understands that she can do anything. She’s going to have done more in the first two years than some do in a lifetime. And we’re going to make sure this contributes to her sense of self and her confidence and her life going forward.”
– Jessica, mother of Avery, age 2, ASD
I mean I think my husband and I were mostly okay by ourselves. The hospital is so generous with all of their practitioners, all of the nurses, all of the doctors, everybody there is so wonderful that they sort of provide a really big support team to you before you even walk out the door, and then obviously our families, but on some level, you know, nobody- with the exception of other parents going through the same thing- really understands what it is and what’s happening and you know, you can explain the procedure to somebody 25 times, and I think they’re still not going to understand it. It’s such a different world, that you sort of insulate, like, we just stopped wanting to explain things to people. We were kind of like, “we’ll tell you when she’s okay, and we’ll tell you if she’s not” and we kept things very basic with people, but I mean, we were tight. We didn’t really need too much support beyond one another, and the hospital, and our families.
– Leslie, mother of Margaret, age 2, VSD
Honestly, everyone is different, but I learned a lot about faith and just the power of prayer. It wasn’t me going to my church, and it wasn’t me listening to a minister, it was literally sitting in the dark, in the dead of night being like “My baby’s not breathing, and I can pray, that’s the only thing I can do right now.” I read an article where someone said they hate it when people say “God doesn’t give you more than you can handle” because He does. He gives you more than you can handle so you get on your knees and pray. So for me, I really do think that it’s a huge test of my faith, and that was a way that I could cope—was knowing that God had a plan for our family and He has a plan for Elizabeth.
And also like, the partner at my law firm who I worked for, one day on the phone he said “Anna, there are always blue skies ahead. Right now, everything’s so dark and so bleak, but you have to look for the blue skies. There are always some blue skies ahead.” And it’s so funny because he probably didn’t even remember saying that to me but I like, hung on to that for dear life. “There will be blue skies, there will be blue skies.”
– Anna, mother of Elizabeth, age 2, VSD
Alice: To be honest, the thing that’s helped me the most with coping is therapy. It took probably two years- it wasn’t until about a year and a half ago that I started seeing a therapist just one-on-one, and she taught me a lot of strategies. You’re used to your personality for 30 years, and then you have something like this happen and sometimes you have to adjust who you are to be able to deal with it. And then the therapist that I was seeing was so inspired that she started a support group for other moms in our area, so her and I have kind of been working on that, now there are like eight moms who meet every two weeks, so that’s been really helpful too. Allan, do you have any other things that have helped you cope?
Allan: Going to therapy has definitely helped, my wife and I see different therapists. I was a very active runner before they were born, and I stopped recently after trying to get back into exercising. But trying to remember that you still have to take care of yourself as well, health-wise. It’s a stress reliever to go out and run.
– Alice and Allan, parents of Zach, age 3, Single Ventricle
Unfortunately, there is not a lot of support for families that I’ve found. At the very beginning even before she was born, I did internet search after internet search to try and find a support group, or to be able to connect with somebody who could answer questions, like “What was it like for you?” Trying to find another parent with a child who had similar diagnoses. My husband and I talk endlessly about it and we’re the best support for each other because we’re living it. My family, my mother, my sister, my brother, my dad. Friends, they’re a good support, they’re a different kind of support from my husband. I wish there was more support for parents. The hospital was great and asked if we needed anything, offering support for her, but it’s not the same as being able to talk to another parent who’s been down the road before you to say, “this is what we experienced.” I mean, even just little things prior to the first surgery, like what to bring, what worked for them in terms of living at your child’s bedside for seven days. Simple, little things like that all the way up to how to sit and survive in the ICU while you’re waiting, while your child’s in surgery, that sort of thing. My goal one day is to kind of develop something that would be a great avenue of support for parents.
In terms of myself, there’s been a lot of tears trying to get through it and step back and think about what she’s been through, what lies ahead. Feeling proud of what we’ve gone through, it amazes me the strength that I’ve had. Because, although my husband is great, he’s great with her, he’s a great support to me, I think I’ve taken on the sole responsibility and the sole advocate for her to know every part of her medical diagnoses, to know every single part of her medical history and where she’s been. And it’s a lot of information to always have and to always be able to rattle off. There’s no one outlet that I utilize to decompress sometimes. It’s tough, I think in a perfect world, to talk with another mother who’s been down that road would be probably the best support. My husband can give me a great amount of support, but it’s different as a mother what you go through. Because you go through all of those emotions and you carried that child and the guilt thinking that you had done something, trying to figure out why.
– Roxanne, mother of Amelia, age 7, Dextrocardia
I mean my major concern has been, “what if they’re right? Are we doing the right thing with her care plan, is that what we should be doing?” And I’ll be honest, I’m not sure. Since she had the sympathectomy and afterwards her QT was actually much longer than it was pre-surgery, and no one has been able to provide any reason. I want some kind of reason why that would happen, and there’s really no information about whether that has actually worsened her prognosis. My husband, he’s a physician, and when she was in the hospital last summer and we were trying to decide about whether to do the sympathectomy, we spoke with Electrophysiology staff and also did our own literature search in med papers about it. I guess trying to get data has been a way to deal with the uncertainty and the anxiety, but on some level, there’s not a ton of information that is available about the condition and so that resource is somewhat limited.
– Catharine, mother of Willow, age 8, Long QT Syndrome
Donna: It’s been very helpful because we can actually understand the condition and when things are going wrong we can kind of understand what’s probably happening and why this is taking place. It can be hard for me—I work in surgery, so if people come with a broken bone, we fix it. If they have colitis, we take care of it. I think that’s been the hardest part for me, with this defect being so complex, not being able to just fix it, because I’m in the business of fixing people. So that’s been a harder thing for me, just accepting that this is a lifelong thing and that things will continue to come up, and that it will never ever be just fixed.
Nathan: I would say having a medical background has been comforting just so I can understand everything, because I’m the kind of person that wants to understand everything. And even at some point when the doctors were at a loss, they would ask us what we thought because we were with her, we knew her more, we’re her parents and they would rely on some of our suggestions to help them make more informed decisions and we could relay more health-based facts because of that background.
– Donna and Nathan, Mother and Father to Leah, age 10, HLHS
For me, when Austin was two I had a conversation with Dr. Meyer, asking “How many more surgeries does he need?” and he started telling me about the tissue engineered heart valve that they’re working on in a research lab. I said, “Well, when’s that going to be ready?” and he’s just saying, “It takes time because of the funding.” I said to my husband, “I want to raise money for research that could help Austin, it could avoid more surgeries.” I think for me, that’s been therapeutic because as a parent, it’s just a very helpless feeling when your child’s in the hospital and you can’t do anything. It’s in the hands of the doctors and the nurses. Too many times I’ve held him down while they’ve tried to put IVs in him, he’s screamed and cried and begged me to make it stop. I guess that helps me too, to feel like I’m trying to do something to make a difference.
– Grace, mother of Austin, age 10, TOF
I don’t know that I do cope is the honest answer. It’s never out of my mind, as I said, I’ve carried this ICD in my pocket for the last seven years—I don’t take it out of my pocket. Someone asked me, “Why do you carry it?” I had no answer for it, because I don’t know why I carry it. I just said, “Oh well it’s a connection between us.” That’s just what came out. I have no idea why I do that, but I do it, and it’s like my security blanket almost. You try to cope with one thing at a time.
My wife, it was awful awful awful for her, but her coping was different. She’s not able to stand up and talk about it. She’s like, “I cannot do it, I cannot speak about what happened to my child to people. I know that they only mean well and I know it probably would be better if I could, because it might help other people, but I just can’t do it, I’m being selfish.” So she said, “The only way I can sort of give back is-” she’s on a board at the rehab hospital helping the inpatients, giving advice to new families when they come to the hospital, what they should expect, advising the hospital on what should be left out, though mainly on communication, because that was a big thing when you go from a hospital-hospital to a rehab-hospital, it’s a halfway house almost. A lot of it you’re left on your own, because that’s the point of it, it’s a step to get you home. And it’s a big step for people, and they go in and they don’t know what to expect, so that’s how she helps out.
Myself and Chloe, we like to go give talks in schools. We’ve run CPR classes, mass CPR classes, getting multiple people trained at the same time. We do fundraising events, we do anything- we work a lot alongside the American Heart Association. We’re part of what’s called the Youth Advisory Board, so we’re contacting schools, going to schools, finding out what youth organizations and schools need. A big part for me was my daughter’s small little school had an emergency medical response plan in place, had staff trained in CPR—none of this I was aware of, or none of this prior to this event had I ever thought to ask, because why would you? Your six year old child’s not going to have a cardiac arrest at school. But they had this medical emergency plan in place, now they have AEDs in place also, they didn’t have AEDs. We go around getting AEDs in places like schools, sporting facilities, giving talks.
Just very recently, in fact, I spoke to the neuropsychologist at Children’s Hospital, myself and Chloe went, Dr. Ware. I spoke to her and Chloe spoke to her separately, and I said to Dr. Ware, “I want you to ask Chloe whether she wants to continue doing things with the American Heart Association. Whether she feels comfortable going and talking, whether she wants to step away from that, and maybe pick it up another time. Is she doing it to make me happy, or is she doing it because she wants to do it?” So Dr. Ware asked her that question and Chloe said she wants to do it, which is good. It makes me feel better. Because sometimes as a parent you think, “I don’t want to be forcing her to do things she doesn’t want to do just because I think it’s the right thing to do.”
– Jim, father of Chloe, age 13, CPVT
Talking a lot with the doctors, getting the information, searching it and finding other people who had been through this, that is sort of what I started with. You would think there would be a lot more information out there that is accessible—and there is—it is just hard to find. Just understanding what was going to happen. Talking to other families and my brother’s best friend from high school who is starting his practice as a pediatric cardiologist, so I used him quite a bit. He was very helpful, assuring we were doing the right thing. We looked at some of the data. Children’s was very open in sharing the information. I said, “I have this friend who is a cardiologist and I want him to see it.” So we talked about it with him.
I started creating my blog just to write down what was going on during visits, just to keep my parents and family and whoever else up to date. It kind of helped me, each time we had a visit, or time to go, I would update that. That helps get some of the feelings out of what you are thinking. That was helpful to me. Just talking to friends and family about it. We knew the course of action was right, there are times you have to, for lack of better words, “man up” and deal with it. There are certain times in life where you have to deal with some really hard stuff and if you can’t do that then your child is not going to be able to. When it is all done you can exhale a little bit. You are on guard, ready to attack kind of mode.
– Paul, father of Sierra, age 13, Anomalous Aortic Valve
It’s hard. It’s hard for her to be away at college, although there’s a relief in a lot of ways in that she’s doing well, that’s always great, and when she’s not doing well it’s really, really hard. I just kind of barrel through with work, and I’ve got another kid at home. It’s definitely been hard, but we also really cherish time together as a family, or I try to, my husband too. For me, I exercise a lot, I rely on my friends and I have networks. I have my high school friends, my college friends, my friends here, my friends from when I lived in New York, and I rely on my friends a lot.
I would say reach out to your support system. Reach out to whoever is supportive. Stay away from unsupportive, stay away from people who give way too much advice or contradict what you feel is the right thing to do, because that just causes a lot of stress. Take anti-anxiety, anti-depression medication if you need it. Take care of yourself to get through it. Do what you need to do to get through, and be kind to yourself because it’s really hard. I know for me I did get a prescription for anti-anxiety medication and I was too afraid to take it because I was afraid if I took it I wouldn’t be sharp, and I needed to be sharp, but being sharp really just meant being on edge at all times. When I let myself take it, I was better. For me it’s talking to people, for my husband it drives him nuts that I talk to so many people. I think it would help him if he had more people to talk to.
– Amy, mother of Rebecca, age 19, ARVD
I’m a runner, and I’m a little bit of a gym rat, so once we got back, my routine resumed fairly quickly. He was home schooled for 6 weeks. He had two teachers who came to the house three days a week and worked on assignments with him, so except for having to give him meds, and work with him on just making sure that he was taking the meds, things got back to “normal,” for lack of a better word, fairly quickly. And then he went back to school for May and June.
– Louisa, mother of Gabriel, age 20, HLHS
Melanie: James used me because other than the day he went to the ICU, I think I was fairly calm, and I was very confident that things were going to go well. I knew he was in the best hands—you can’t do any more than that for your kid. So I think we handled it pretty well. The only time I really had a hard time was when they were trying to get the IV in him and he was sobbing, and my kid doesn’t do that, and so I knew he was so stressed with what was going on. I stepped around the bed where Dr. Newburger was sitting talking to Walt and lost it, and Dr. Newburger kind of looked at me because she’d never seen this in me, and I just lost it. And then all of a sudden I hear, “Okay, ultrasound’s here, we’re going to try again.” I looked back to James and my face and his face going, “Okay, you’re going to breathe through this and they’re going to get this in. You’re going to be okay, we’re going to get this in” and it’s like you flip a switch.
Walter: Yeah, they weren’t trying to stick in a normal size needle, it was big one.
Melanie: It was a big IV in case he crashed. I stayed with him the entire time even though he was 17 years old. Walt would go back to the Yawkey House and I did go out a couple of times, but I stayed with him. I remember saying to him one night, “Are you okay that I’m staying? Because I need to stay” and he goes “I know Mom, it’s okay.” But I think he was also confident because he knew I knew what to look for.
Walter: Yeah, Mom’s the medical professional. She’s knows what to look for.
Melanie: But I was not prepared for the total emotional letdown when I got home. I thought I was going back to work the following week. I could not go back to work that soon. I was just a basket case. I was exhausted, I was emotionally—crying at anything, and I kept saying “Why am I doing this now? We’re through the-” and everybody goes “Yeah, but who was strong all that time?” I was not prepared for that, I remember telling the another mom, “You’re going to be strong during this for your kid, but afterwards, you’re going to crash” and she said, “I wouldn’t have been ready for it either Mel, had you not said that.” Because you’re not, you think it’s over, you’re through the worst part, but…
Walter: It’s so important. The advice doesn’t even have to do with the operation itself, it’s the, “Go in there, you’re going to find this, there’s going to be tubes all over, whatever, body’s going to be cold afterwards, you’re going to go into prep, you’re going to get put out of prep, then you’re going to get taken down to this other area and a nurse is- every so often is going to let you know what stage the operation’s on, and then the doctor will come in-” just knowing that, stuff for a lot of people is important.
– Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery