When I was pregnant we were referred to the Advanced Fetal Care Center. They are amazing and in addition to all of the cardiology team, we had really some amazing nurses while we were there. Our experience with the hospital through them was so comforting because they’re the first people you see. You don’t work with them after the baby’s born, but they were just all top-notch and we still keep in touch with one of our nurses there. They think of everything, they really do. You meet with pretty much everybody—social workers and patient consultants. They try and prepare you as much as you possibly can. And there are people that we could have met with—you could have met with religious people, you could meet with all sorts of stuff that we didn’t take advantage of. They’re very thorough.
One thing that we didn’t know, and we might have just missed this, they take you on a tour of the ICU as part of the introduction to the floor, but we never knew that there was anything beyond that. We thought that she would be there forever. We didn’t get a tour of the regular floor or understand what it meant to be in a step-down unit. I would have liked to have known that, because the procedure and the format of the whole thing is very different. That was the only thing that we were confused at. The expectations of when you get moved are very different. So I think just to prepare the parents, “the step-down unit is where you’re actually going to be a parent now.” It’s very different, especially when it’s your first and you have no idea what you’re doing. They were very helpful, even with all of that.
– Leslie, mother of Margaret, age 2, VSD
At Boston, the sedation wasn’t working, they give her that stuff that’s supposed to make her calm down and feel woozy, but Elizabeth had been sedated so many times that it didn’t really do anything to her. So the anesthesiologist was like, “This isn’t working, she’s not going to go to sleep with the sedation, come on, Mom” And at that point, I was just in a blur, and I didn’t know what he meant, because I thought he was going to take her awake and crying and I had to leave. But he was like, “No, you’re coming back to the OR with us.” I walked back to the OR, scrub on my head, everything, I’m holding her little lovey, and I stayed right with her, she had her lovey in her arms, and I was rubbing her head. She never cried before falling asleep. And then the second she was asleep, they were like “Okay Mom, we’ve got her.” So when I was already petrified, I didn’t have to hear her screaming and crying. They made it gentler.
And then there was a nurse who I never saw after, I don’t know if she was a guardian angel or what, but she walked me from the OR all the way back to the waiting room, and she was rubbing my back. I was hysterically bawling and holding on to my daughter’s stuffed animal, and I just remember her talking to me like, “You’re a mom, it’s hard when you’re a mom” and just going on and on about the struggles of motherhood. It was so beautiful, this moment where a total stranger was being so kind. And she wasn’t saying, “it’s going to be okay,” and she wasn’t saying “it’s fine,” she wasn’t saying any of that. She was just like “Being a mom is so hard.” Because telling someone it’s going to be okay, it’s like—we don’t know, nobody knew. It was just very, very kind.
– Anna, mother of Elizabeth, age 2, VSD
One of the medications she was on, it dehydrated her a bit. We had her at the hotel maybe a day, we called her doctor right at his home and said, “Listen we’re having this issue, don’t know what to do, tried everything, can’t get her settled down.” He says, “Oh, bring her back to the Emergency Room.” We don’t live far away from the hospital when we stay here, and by the time we got here and got into the Emergency Room, we were probably in the Emergency Room maybe 15 minutes, and he was right there, he was in the Emergency Room. He walked in the room he says thank you to the nurses, “I’ll take it from here” and about two minutes later the same nurses that were on the ward on the eighth floor, they were in Emergency taking her right back upstairs. I was on the telephone with her cardiologist, speaking to him at his home—he gave us his numbers and everything. He had said, “If you have any issues just give me a call.” I guess we’re the type of people that don’t really like to bother people, so it took us a little while to actually get nerve up to call and eventually say, “There’s nothing else we can do, something’s wrong.” He was very calm about it. They did what they had to do, and 48 hours later we were being discharged again. You couldn’t ask for any better care.
– Nick, father of Jade, age 6, Dextrocardia
Come in with your questions, and no question is silly. When we were pregnant and just finding out about it, you want to know, “Okay, am I going to be able to deliver this baby?” But then, “what does it mean for her life?” And as they told us at the very beginning, once you’re a cardiac patient, once you’re a pacemaker patient at Children’s, you are for life. They were like, “Even as an adult she can come back and have a new pacemaker put in and followed by Children’s.” So I think they’re really good at giving us the amount of information that we wanted to know, and that was really helpful for me just to hear. That’s the thing that’s great, they have a lot of resources but they also have a lot of data. Like, “We have seen a lot of people, this is what it looks like.” I think that’s helpful, I think every parent wants to, “What is it going to look like when they’re age five? Are they going to be able to go to college? What does this diagnosis mean for my child?” I thought they did a great job at helping us with that.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
We were so fortunate to have had another family to rely on and hear their experiences. Then when we were at the hospital, we were fortunate to connect with some other families in the ICU, and talk about their experiences too. That was very helpful to me to see what was going on. And I think that the hospital, the doctors and the nurses, and Child Life specialists, we really relied really heavily on them and asked them tons and tons of questions. We asked every question that popped into our heads, we made sure we asked every question no matter if we thought it was a ridiculous question. We had a lot of family we relied on too. It was a struggle, but I think we really tried to reach out to anyone and everyone that we could to help us.
– Abigail, mother of Johnny, age 9, HLHS
We’re very close with our local pediatric cardiologist here, and we have their cell phones, and they’re available to us, and having them available or just knowing that is a very important support. And then we have really good communication with Dr. Breitbart up in Boston, we can call him or email him whenever we need anything, and just having that type of personal relationship is very helpful.
– Nathan, Father of Leah, age 10, HLHS
I love the cardiologist we see for the kids, he’s very methodical, he typically will take the very safe route. He’ll do the extra test—he’s very conservative about it, and I’m happy about that. But I think it’s very important to, especially as you’re coming up to a visit, to write down every question, keep a pad by your bed so in the middle of the night when that question pops into your mind you can write it down. Because it’s so important to not walk out of the office going, “Oh, I should have asked that” or “We didn’t talk about such-and-such” Sometimes what I’ll do is I’ll send them in an email to the nurse practitioner ahead of time, so she has them and the doctor knows he’s going to be asked this and these are things we need to allow time for.
At Boston Children’s everything is a joint decision. When we were meeting with the electrophysiologist and the cardiologist, they were at odds about what should be done about putting in the wires, but we were part of that decision, so we were able to say “No, this is the course we want to take.” It wasn’t a decision that was made without us and we were just told about it afterwards. They really want the whole family to be part of the decision of what the best course of action is. Once the kids get older they want the kids to be a part of that decision as well. So all our dealing with anybody there, the nurses, the surgeons, the cardiologists, electrophysiologists, x-ray techs, everybody, things are always very well explained and we know we’re a part of a team. We know we’re just as important a part of the team as they are.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
One of the great things about Chloe’s doctor is that he’ll tell you what to expect in the future. Now, at this point we’re at “A,” and she can do this, and she can do activities in the school like gym or play basketball or whatever, at this level. But as she gets older, we may have to re-look at that and she may not be able to do that, because it’s not that she’s changing, but the intensity of the sport that she’s active in is changing. So, everything is age appropriate.
But in the beginning, we had no diagnosis. She was tested for long QT, all the normal things that would cause a cardiac arrest without any pre-diagnosis, and they all came up negative. Everybody said, “We may never know what it is, but the treatment is going to be the same. The therapies are going to be the same. Nothing is going to change, she’s still going to be in the same situation, we just don’t know what it is.” Well that didn’t lie very well with me because I want to know why this happened, and if this happened to her, this could also happen to her brother, and if we don’t have a diagnosis, there’s no way we can test him.
So I did what every doctor’s nightmare is, I spent hours on the computer. I found this thing called CPVT, and looked at what had happened to Chloe, how she’d responded, all the rest of it, and CPVT. I went to our doctor and said, “What do you think of this? Do you think this could be something? Because to me it looks like what Chloe’s got.” And he said, “To me it looks like what Chloe’s got too, well done, let’s get her tested.” We did, and it came back positive. I was tested, my wife was tested, and we both came back negative. I said, “Well, how did that happen?” And the doctor said, “She could have just spontaneously mutated this gene. This is how it happens, things start somewhere.” So I said “I need to get my son tested, I need to get Alex tested.” And they said “Well, if you don’t have it, and your wife doesn’t have it, and Chloe just spontaneously mutated it, the changes of your son having it are as high as the chances of your next door neighbor having it—there’s no correlation.” I still wasn’t really happy with that, and eventually they tested my son, and it came back negative, which we kind of knew it would, but we just wanted to know. Because he’s away at college now, so he’s not here, I can’t do anything if anything was to happen to him, so I had to have him tested.
– Jim, father of Chloe, age 13, CPVT
What I hated was when she had her second episode, they were trapping us at that other hospital and they wouldn’t let us come back here. They wanted to put the defibrillator in there. I did not want that to happen. I agreed that she needed one, and I wanted it done with her electrophysiologist here. They were saying, “If you take her out against our advice, we can’t guarantee that your insurance will cover it,” and I said, “You’re not putting it in here, I’m not giving you permission for this.” I think it was three days, maybe four. Finally they said “Okay, our defibrillator doctor went on vacation, you can go back to Boston.” I’m not exaggerating this, it was unbelievable. Then we had to go by ambulance—which is fine—and then they put the defibrillator in here. That was rough. Dealing with insurances can be hard. I have a huge deductible which is usually used up in February or March, so things are really expensive. Navigating insurance is hard.
– Amy, mother of Rebecca, age 19, ARVD
I think we’ve been blessed with an amazing team of doctors and nurse practitioners at Children’s. I email any and all of them and I always hear that day or that night. My only thing was the whole developing post-surgical protein losing enteropathy thing—because that totally blindsided us. But again, do you want to go explain to everybody all the possible scenarios and side effects? We know about the fact that he may need a transplant down the road. We’ve had some pretty frank conversations with his doctor and with the head of the transplant program, so we know about that as a possibility. I can’t think of a question that we’ve ever asked that we don’t feel has been answered honestly. Once we found out about the PLE, his doctor was really helpful in terms of sharing their knowledge and how people deal with it. Just be willing to communicate.
– Louisa, mother of Gabriel, age 20, HLHS
James knows how much we trust his cardiologist, and he does too. I think that trust with whoever your doctor is so important. My advice to other parents, if they’re not comfortable with whoever they’re talking with, they need to go get another opinion, because if you aren’t comfortable with the people doing it, then it’s not going to be an easy experience, and it’s not easy anyway. You want somebody that you completely trust and I couldn’t trust anybody more than we trust our cardiologist and our surgeon. But also the whole staff—one of the things we commented on when we left was how even from the custodians all the way up, it was all about the kids.
– Melanie, mother of James, age 20, Anomalous Coronary Artery
You get to high school and then you get to college and there are things like drinking that come into play and that’s a big deal, that’s a really big deal. I would say to his doctors, “Well, you need to talk to him more about that. If he really can’t drink then you need to tell him why, and if it’s only safe to some level, you need to explain that to him.” Because for doctors and parents to say, “Just don’t do it,” that doesn’t work with any teenager.
– Diane, mother of Jake, age 21, HLHS