I did use Mended Little Hearts as we were preparing to come to Boston, they were very helpful. The local chapter is incredible. We were on the surgery schedule twice and had the surgery cancelled because she started to gain weight again, and so I would reach out to them and say “We’re coming,” and they responded with, “We’ll bring food for your family.” That is an amazing resource that is right there in the Boston, Rhode Island area. And that’s really helpful, because they’re other moms, they’ve lived through it.
And there’s another mom, a Boston Children’s mom, she created this fantasy story basically for her son that he’s the dragon slayer and that’s what his zip-line is, that he was in a fight with this dragon. So I started following her on Instagram and when we were scheduled for surgery, I sent her an email. She emailed me multiple times with long emails that were like, “Here you can get lunch” or “Have your husband go here and pick up food,” really basic things, but incredibly helpful. We’ve become like heart mom pen pals. We’ve kind of worked together for CHD awareness, so she was really helpful.
If someone reached out to me, I would give them similar information—principal, daily life, being a mom stuff. But my friend said two really powerful things. She told me to prepare myself mentally for what Elizabeth would look like after surgery, and she offered to send me pictures of her son. I declined her offer because I thought that was really personal and I also think that no one can really prepare a mom for that picture of their own child.
But I would repeat that advice, shore yourself up before that moment, because between me and my husband, I’m the one that’s more tough and I can handle blood and when the girls have a boo boo I fix it, but in that moment, I did not handle it well at all. I literally fell—I physically fell seeing Elizabeth. And my husband caught me, because I was like, “I can’t process this.” And the nurse who was caring for Elizabeth, she went and got me a ginger ale because I hadn’t eaten all day, and I hadn’t realized I hadn’t eaten all day. I didn’t want to eat and I still probably couldn’t go back in time and make myself eat because just the thought of that, I just wanted to throw up all day. But they need to prepare themselves for that. It’s going to be really hard. It may sound stupid but have someone standing next to you because you might fall down. Because no mother should ever have to see that.
The other thing is preparing your older child. The psychology of what’s going to happen to their sibling. My heart mom friend told me about that in an email. Like, start preparing Emily for what’s going to happen to her sister. And that’s when we started reading the book Zip-line and we’re going to talk about your monkey’s tear, and we’re going to talk about Elizabeth.
– Anna, mother of Elizabeth, age 2, VSD
In the hospital you meet people, you have a roommate, and even though you’re kind of there together for these fleeting moments, it’s very personal. You’re literally sleeping with these people, you’re with them 24 hours a day, so you talk and everybody kind of gets to know each other’s story and everybody’s going through different things and different levels of severity and has been there for different lengths of time. I mean there are people who are in the ICU for months if not years, I mean it’s just amazing to me to see the parents whose kids are that way and how strong and brave they are. It’s unbelievable the amount of strength on that floor. It’s pretty amazing.
– Leslie, mother of Margaret, age 2, VSD
A family friend had been through this with his daughter five years prior, and he was the first person my husband and I talked to about this. We wanted to know about their experience and he told me something that was so interesting, because at the time our heads were spinning and we were just in this fog and we were firing a million questions at him, and he said “I wish I had worried less. Now, looking back, I wish I understood that it would be okay.” At the time, I was thinking, “I can’t imagine ever feeling that way. God, I hope I do, but I can’t imagine ever feeling that way.” But I do. And talking to parents like that, and the positive experience, was really powerful.
– Jessica, mother of Avery, age 2, ASD
When Isabelle was born I just wanted to talk to one person, just one person with a child who had the same thing, and see that they were growing and that they were surviving. I searched and searched and then I found the Little Hearts* website and I would read all these stories and I couldn’t quite find exactly the things for Isabelle, but I would find these stories and they were great—of these kids who were doing okay, for many years, and that’s what I needed when she was born. I needed to know, “is my baby going to make it?”
– Erica, mother of Isabelle, age 5, Anomalous Aortic Valve
In the beginning, I got consumed by support groups and speaking with families going through a similar thing, and at that moment it was very good for me. I needed to feel like I could talk to people that really understood what I was going through, so it was really great. But as time went on, because what Carson has specifically is pretty serious, a lot of the families that I spoke with lost their children and it was very hard on me to see these other families going through all this grief. Then you feel guilty and sad, and it was really tough. So it was good for certain reasons, and bad for others.
I still keep in touch with a few families, but they’re kind of the last of the original group that I started with. There’s a few of them that I still talk to now and then, but I’ve really kind of stepped back significantly from that whole scene. I found that when I was hanging out with people that didn’t have children that were medically ill, I was still always talking about medicine and sick kids. It’s a sad thing and people don’t really want to hear about kids dying. I got lost in it all. So it was good for a certain purpose, but it’s definitely important to live in the moment and the reality of the world too, and not get consumed by it all. I think I just had one of those “Ah-ha!” moments, where you’re like, “What am I doing? I need to start going outside and looking at the sun and being grateful and happy that I have my family and focusing on that.”
– Amanda, Mother of Carson, age 5, Heterotaxy
A gentleman in Connecticut started a foundation in honor of his late wife and unborn son who had passed away when his wife was pregnant. They award trips and gifts and kind of wishes to kids with severe cardiac issues, and when she was one month post-op, she was awarded an all-expenses paid trip to Disney World, because that was her wish. He had contacted me and asked me to ask her, “if she could have anything in the world, from a new toy to a special trip, what would it be?” She had said, “I want to go see the princesses at Disney World.” So last year we went to Disney for five days in Florida and had a wonderful trip. She had a blast and it was a great trip for our family.
We had never really done anything more than a day trip before because it was worrisome to go out of state—especially in the beginning before her surgeries because she was so sick. Then afterwards we didn’t have a lot of money to be able to do a lot of things, because of all the time my husband took off for trips, for visits and surgeries was unpaid, and I wasn’t working a lot at that point when she was first so little. So it was really great, it was like a new chapter of our life had started. She was healthy, we could go on this great wonderful trip to Walt Disney World, the kids had a phenomenal time, so it was a great experience for us.
– Roxanne, mother of Amelia, age 7, Dextrocardia
There were a few people that were also inpatient at the same time, all families who we still keep in touch with. There was a family that was there at the same time as us that we were asked if they could talk to us because their child was on ECMO, and the medical team thought it would be helpful for them to talk to parents whose child was also on ECMO and was successfully weaned off it. And, thank God, their daughter was also weaned off it, and she’s fine. But those relationships, it was more just meeting and talking to people and sharing that unique bond of understanding.
– Grace, mother of Austin, age 10, TOF
We’ve met several families while in Boston that we would keep up with through CarePages, so we’re really close to another ten year old, that we’ve only met when they were born, but we keep up with them and their family and feel like we’re close to them just because of the experience that we had together. And locally we work with the Pediatric Cardiology Foundation which is kind of with the doctors that see Leah, and so we have met a lot of families locally. A handful of them with hypoplastic left heart, and then other families with children with other heart defects, so it’s a growing network support group here locally as well.
When Leah had her diagnosis, we didn’t really know other people with these experiences. I tried finding people, goodness I was calling everybody I could think of to be in touch with someone else who had gone through similar situations. We really just kind of relied on each other and on our medical background and research and the doctors. Knowing that the doctors were telling us everything that they knew and we could understand what was going on really helped make us feel like we were handling it as best we could, just having that knowledge. Again, our faith, our family and friends, their support were big coping mechanisms.
– Donna, mother of Leah, age 10, HLHS
When I was first diagnosed, it looked like I had ARVD, ventricular dysplasia. I went online and I joined a group and it scared the heck out of me. I was trying to look for information—I had had no health issues before that, and a perfectly fine birth with Rebecca. I had never dealt with health issues. When I went online, some woman was a nurse and said she’d call me. She called me up and said, “I think you’ll be fine, people used to just die from this disease but now we live into our fifties and die of heart failure.” She told me that when I was in my thirties, it was just too hard to hear. So I dropped out of these groups, I couldn’t do it anymore. I was obsessing about it—at night, online looking at stuff and I had to back out of it. So I’m not on groups. Neither is Rebecca. I kind of rely on my doctors for the information, I’ve done my research. My friends think that I should be doing more, that I should be being more proactive but I feel well covered. I feel like we’re covered.
– Amy, mother of Rebecca, age 19, ARVD
The first family we talked to had not even had their first visit with the cardiologist. They had not fully decided whether they were going to do the surgery, their son was only 13, and so they weren’t giving him the same kind of choices that we gave James at 17. Talking about the pros and cons of doing the surgery, not doing the surgery, and for me just reminding them that this is the absolute best place to get this done, and despite James’s complications, what an incredibly positive experience, but yet at the same time how difficult it is to see your kid go through this. I tried to tell them a lot about what they’re going to see, what the routine is like, because for me, I needed to know those pieces and what to expect immediately after surgery. Then we talked about, “Yeah things can happen, but one of the reasons I wanted him in Boston was that the cardiac ICU is for kids. It would be an adult cardiac ICU in some other hospital. In Boston, if there are problems, they know what to do, they know how to deal with them.” To me, that was reassurance.
– Melanie, mother of James, age 20, Anomalous Coronary Artery
Our doctors connected us with some families who had children born with heart defects that we could speak to and I was pregnant at the time. I never talked to anyone after Gabriel was born probably because I was so busy, but I remembered that was helpful for me. I spoke with people who had children in good places too. Nobody would have ever wanted to talk to me when I was in the midst of Gabriel being hospitalized for the PLE. But when I was pregnant, I did think it was helpful to speak to somebody and said that their child was delivered and that everything had been okay. I don’t think any of it was sugar coated, but at the same time, I don’t think that anybody was really at a tough time waiting for a transplant. It was helpful, for me because I had some ideas about what to expect, but to actually speak with a parent, who had gone through it, I thought that was beneficial. The down side of that is, once you connect with those people, they could stay connected forever. And if something tragic happened, you couldn’t control that.
– Louisa, mother of Gabriel, age 20, HLHS
Courtney: His brothers certainly don’t let him get away with things. So I would say growing up he had great friends and they didn’t treat him differently, he didn’t act differently. When there was a boy at school who was diagnosed with Leukemia, the headmaster said, “David, this boy will be at Children’s, could you pull together some people to send over a card?” And David would go back to Children’s and see the boy. Because of his experience, they expected him to take the lead in helping other kids. When he was in high school he was also involved with Children’s hospital, he would go in, meet with patients and their families, and talk about what surgeries they were about to have.
Richard: This was when the parents and kids were doing the pre-op stuff, and David would come and he just looked so great and they would instantly relax and realize it’s going to be alright, and seeing someone else who had been through this. I wish way back we had had the advantage of that when we were first coming in for his surgery.
Courtney: When we had the surgery at four, his cardiologist suggested that I speak with one of her other patients’ mother because she was a nervous wreck. We’d never met before but I talked to her and said, “I know how you’re feeling.” She was worried about the scar, she was worried about this—you just choose these things to be worried about as a parent, and they become almost blown out of proportion. I think you grab on to little things sometimes because you’re so petrified about the big things. So I think we helped her. He also went to Washington D.C. and spoke with the woman who runs the Patient Family Center. There was a conference for patient advocacy in Washington, and David went down and spoke. That was pretty cool. There were some kids from Texas speaking about what their hospital was doing, it was great. It was teenagers who had been through things talking about the hospital and how to make it better for those who come after them.
– Courtney and Richard, parents of David, age 23, TOF