Allen: For us, gathering more information really works. When we were talking with Dr. Newburger there were a few times where we just were making sure, “So, this is your opinion, right?” There’s clearly a large staff at Boston Children’s, so also asking, “who else is in the mix? Who else is making this decision?” She gave us a lot of confidence that, “Yeah, I’m looking at this, but then we’re always checking things with our peers.” Meeting with the surgeon and making sure we talked to him about what his opinion was and everything helped. I think more information and more conversations with the people who are professionals, that’s what we gained the most help from.
Miranda: That’s totally right and I would add a few things. The first is we called our pediatrician and said “This is what they’re telling us, but we don’t know how to parse out these three different opinions. We’re thinking about getting a second opinion but we don’t really know the medical system, can you give us advice?” And she said, “I definitely think you should get a second opinion.” So just using the pediatrician as a good link to the medical system and someone who can translate the two worlds to each other.
The second piece is we took the concerns that we heard from one doctor and we shared them with another doctor, and asked them to address those concerns. So basically, we listened to everything one doctor said, and then we took it to the next doctor and said, “This doctor said this, why do you not agree with that?” It’s interesting to hear their logic and why they did or didn’t agree with the previous opinion that we got. That helped us understand where the nuances were between them, and it helped force them to defend themselves when frankly we didn’t even know what questions to ask.
Miranda: We also spent plenty of time on the internet. We tend to stick to the .edu or .gov sites. And thinking about is this coming from a for-profit company versus an academic institution. There was no WebMD. We went to the Mayo Clinic site, but Boston Children’s or Philadelphia, there were a few other hospitals that explain the condition and explain the surgery and had packing lists which was all useful.
Allen: But as far as where we got our information from, we would only use it as a starting point. Maybe even just to get questions. We never went there and said “Okay, this is what we now know,” it’s like, we would do some reading and then go to Dr. Newburger, or the doctors in Connecticut and then ask our questions. It helped us ask more informed questions.
– Miranda and Allen, parents of Serena, age 2, ASD
I had been posting our story on this website, Caringbridge, and my best friends’ wife is a resident at Boston and knew Dr. Breitbart. So he saw a post on Elizabeth’s defects when she three months old. Because every appointment with our cardiologist we were getting really different answers, and at three months said, “She needs surgery now,” my husband and I just felt like, “It’s so uncomfortable.” I posted about it and my friend called me from Boston and he was like “Anna, get her up here.” He was really blunt, he was like “You have to get her up here. My wife will make you an appointment.” I was still recovering from being in the hospital for a month, I had a two and a half year old and Elizabeth wasn’t eating. We were feeding her with a syringe, she would sweat when I was trying to nurse her, she would just sweat profusely, turn blue, pant. It was so beyond anything I knew that was normal. So then we came up and saw Dr. Breitbart, had a full echo there, and that’s where Dr. Breitbart said “This is not a Gerbode defect, this is a tricuspid valve.” He drew pictures and showed me the difference, why they had made the mistake. He was just incredibly gracious, incredibly thorough.
– Anna, mother of Elizabeth, age 2, VSD
When he had the stroke we realized that we should probably be looking into other options. We know a lot more now, and something like that shouldn’t have happened. But we didn’t yet realize that we needed to go somewhere else for his care. He ended up being in the hospital for almost six months after his Glenn. It should have been three to five days. He had a feeding tube, and lots of other issues. We still followed up with the hospital he was going to for the next few months because he was not in any condition to be transported, but once he became a little more stable, that hospital told us that he wasn’t really a candidate for a Fontan anymore, which is the next stage of the surgery.
At that point we had reached out to another hospital in Florida where we were taking him for emergency visits, and their cardiac team also felt like, “Well there’s nothing we can do at this point, we need to just keep waiting and watching.” It was at that time that Allan and I talked to his local cardiologist and decided we weren’t comfortable with waiting and watching. If there was something we could do to give him a future and improve his quality of life, we wanted to know about it. That’s when we reached out to Boston, and a couple other hospitals, and we waited to see what they said. They got back to us, and Boston and another hospital had very different plans of action for what to do. So as a parent, deciding this big thing about your child’s future without a background in cardiology or medicine, and realizing you ultimately hold the wheel to decide which road to take your child down was really scary.
Ultimately, after coming up here and meeting the team, we met Dr. Locke, and he did a heart catheterization, and then kind of sat us down and told us about this new technique. I think Zach was like the third kid that they did in the trial- I’m not sure how many kids they have now. So we were having to decide whether we should subject him to another open heart surgery that was never in the plan—to put him through a really rough year in the hopes that it would kind of give him a better life in the future, because the first time we came up here and we met Dr. Locke and we did the cath, we also met Dr. Emani, and he kind of painted a picture of what his prognosis would be if we just waited and watched, and he told us that we would be lucky to see him go to school and that he might not even make it that long. So when we were faced with that decision, we just decided that we had to give him a chance, and we said okay.
– Alice, mother of Zach, age 3, Single Ventricle
I want to know all of the details, that’s how I deal with things. The bad part is that every kid is so different, that if I actually really took to heart the stuff I was reading online, I would just think that there was no hope for him. You read stuff on the Internet and it’s so sad, like there’s way more sad things online than there are good things. I would say the stories of doom and gloom outweigh nine to ten the stories of good. And so it’s really hard to read all of these people blogging about how awful the process is and then go into it not expecting it to be as awful as what you read. And because every case is so different, and with heterotaxy specifically, every kid’s anatomy is so different, you can’t compare your child with all of these other kids online. So it’s a double edged sword—it’s good to be educated and know what the terms are and what to expect, but you have to be able to separate that and not go too deep into it, because then you just get consumed into this world of sadness and despair, and of bad stories and sad endings and it’s depressing. It’s really, really depressing.
That’s honestly one of the reasons why I love sharing Carson’s story, because it’s not sad. It was hard, we had a hard time, and we went through a lot of tough things, but at the end of the day, Carson is a four year old little boy who runs around and acts like any other four year old little boy. It’s a happy ending story, and so for those other families that are maybe starting the journey with a child that’s similar to him, I’m hopeful that they run into his story and say, “Hey, okay, let’s not read all those other stories of the children that had a hard time, let’s look at this kid who didn’t. Let’s look at this kid who went through the process and always did well and is in school and has friends and plays soccer and you know, is doing good.” Let’s have some good stories out there too. I think even if you say you’re not going to look online, you’re going to, everybody googles everything—Dr. Google is what I call it. Everybody goes online and researches, so it’s good to read some happy stuff too. It’s a hard balance.
– Amanda, Mother of Carson, age 5, Heterotaxy
She had a very slow weight gain, we met the pediatrician to do weight checks, we met with the cardiologist every couple weeks. At two months old, I was nursing her and she continuously came off the breast and was out of breath. I noticed that she seemed to be breathing a little bit faster at rest, a little bit sweatier. We went to see the cardiologist and she was admitted through the emergency room for congestive heart failure. I was pushing, “Alright, what’s the next step? What does this mean? What cardiac meds does she need?” I look back and think if I wasn’t a pediatric nurse, I don’t know what would have happened. Nobody could ever tell us what was in her future, I kept asking, “When does she need surgery? We were educated that she needs a major surgery, what’s going to happen?” And they were like, “Well, we’re just going to see.” Nothing was being done. When she was admitted and we weren’t getting answers, my husband and I started talking about a second opinion.
Our pediatrician said, “I encourage you to get a second opinion.” It was just nice the way that we had already been on board with that and then in talking with our pediatrician, she immediately backed us. Without bringing up Boston Children’s Hospital, we said to her “Where do you think?” And we had already researched and were leaning towards a second opinion at Boston, and she agreed. It was kind of like fate and meant to be. So that day she said, “Let me make a phone call while you’re in the office and we’ll see what we can do.” She got us in with Dr. Lang and when I had talked with Terry Saia the next day, kind of giving a history of where Amelia was, what was going on, what had led up to this point, and then within the week, I believe it was, we traveled to Boston and started our journey there.
– Roxanne, mother of Amelia, age 7, Dextrocardia
I knew nothing because we weren’t diagnosed before birth, but I had known that a woman that I work with had a child with a heart defect. I didn’t know what his diagnosis was but I felt like I needed a little support myself, so I reached out to her, and called her. When I told her what my son’s diagnosis was, you could just hear the gasp on the other line, because her son also had HLHS, and I just never knew that. I never knew what she had been going through all these years, and she’s the one who said to me, “Hey, you need to look at these statistics, this, that, and the other.” Her child had his care at Boston as well. It’s kind of funny because we hadn’t seen him for a few years, and the week before at a company picnic, I saw him running around and throwing a football. To me, that was my inspiration to say, “Wow, look how well this child has done, the care that he got at Boston.” That’s where we really made up our minds. So a day and a half after he was born he was transported, and it was like the third hospital he’d been to.
– Abigail, mother of Johnny, age 9, HLHS
I’m a nurse, so I started talking to any and everybody that I could. I talked with a lot of anesthesiologists, I called my cardiothoracic surgeon that did my surgery 32 years ago, I spoke with even pediatric general surgeons asking about the cardiologist that we got, because I didn’t know anything about him. I just did a lot of research. But our pediatric cardiologist here in town- we asked him, “If this was your child, what would you do?” and he said “If you’re going out of state, you may as well look at Boston.” So then I started researching Boston. I called Children’s and said, “Look, I’ve just been told that the baby I’m pregnant with has hypoplastic left heart syndrome, and I need someone to tell me why I should travel all the way from Louisiana to Boston.” I immediately was put in touch with Dr. Lang, who talked to me for quite some time. He advised me to call other children’s hospitals and talk with them as well, and to make sure that whenever I asked for statistics, that I was careful with that because statistics can be skewed. I was appreciative of Dr. Lang’s honesty and I did call other hospitals. The fact that I was able to talk to a cardiologist there meant a lot. So we asked our cardiologist here, and he knew we had the means to do it, so that’s what we did. So we went up at 36 weeks.
– Donna, mother of Leah, age 10, HLHS
In order for me to cope with things, I need information. We both are action-related because of our military background, but it was both immediately, “Okay, don’t like what we just heard, don’t like the way it was handled. What are our options?” I had other docs I could immediately go to and say, “What would you do? Where would you go?” I will give the doc in Maine credit—he diagnosed it, and our kid wouldn’t be alive if he didn’t, so I have to give him that credit, and that office did connect us with Dr. Newburger.
– Melanie, mother of James, age 20, Anomalous Coronary Artery
I didn’t go home from the hospital with David and start looking into it when I was waiting for that surgery, I didn’t do that right away. I don’t think I could have handled it. I don’t know how many mothers get to go home with the babies for six months before the surgery, but that’s a different situation than a baby who’s born and goes immediately into surgery. I don’t know which is harder. To go home with them and they look great and everybody’s saying, “Oh he looks so great!” and he is so great, but you know that something has to be done.
– Courtney, mother of David, age 23, TOF