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