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

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

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

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