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