I would talk to my mom and dad, so I wouldn’t be afraid, I like to know what was going to come.
– Alexandra, age 8, Pacemaker
Mom: We came the day before her procedure for a bunch of tests and things like that. The staff was amazing- with the child life specialist we went through, we looked at the pictures, we actually saw the anesthesia room—maybe it’s more for the parents than the kid, but it helped us a lot. Her sister has nut allergies and stuff, but the kids had never been hospitalized, nobody had had a procedure, and anything dealing with the heart, even if it’s safe. It just feels really nerve-wracking.
Emma: Because isn’t the heart what keeps your body running?
Mom: Right. I felt really nervous about it, so did my husband. But everyone explained everything, and what to expect, and how long we would be there, and we were able to talk to the anesthesiologist, and what might happen, and how long would it take her to wake up—I think it’s the unknown that feels a little bit scary.
Emma: I had a list.
Mom: Oh my gosh, I forgot that! So Emma came in with a clipboard of questions. I saved those, because Dr. Alexander thought it was so funny, because it was a little clipboard, and the nurse was like “Do you have any questions?” and Emma was like, “Ah, funny you ask!” and she ticked through—you had probably 20 questions on that list.
Emma: A lot of them were questions about like, “What food can I order?” and “Is my room going to have windows?”
Mom: Yeah, it was a mix of things.
Emma: Most of them were kid questions, not like, “Is this dangerous? Am I going to get any shots?”
Mom: But coming the day before really helped, and we had so many opportunities to ask people questions, and I think knowing what to expect and how long it might take and who was going to be in the room and a little scenario planning, like “What if?” And then the other thing that helped me as a parent—Dr. Alexander really explained everything before the procedure, like we would sit at these meetings and he would draw a picture and he would draw pathways and take a picture of the heart.
Emma: I got really creeped out when he drew this like x-ray of the path up to my heart, and then he said he was going to zap it and I was like “What?”
Mom: I liked that, I liked knowing what was going to happen.
Emma: I didn’t. I like it to be a surprise.
Mom: The freezing versus the burning during the ablation. My husband and I are both academically inclined people, so we really wanted to understand the science of it. Like, how long have you been doing this on kids, and what are the options, and what if she just lives with it forever? And he also did explain that you know, eventually Emma becomes a teenager and she’s driving and she’s more independent—that worry that she won’t always be right under our care motivated us to get it done.
– Emma, age 9, and her mother, SVT
Sierra: I just had to do what the doctors told me to do. I didn’t know what was going on. I did what I had to do and I had to stay in the hospital for five days.
Dad: I think that everything is sort of a well-oiled machine on the cardiology floor and they do so many of these. You have a pre-op day which is a full day, it beats you in to the ground. I mean the parent and the kid. There are so many different doctors you see, consent forms and blood tests and this. I think Sierra will agree you can’t really know what is going on, which is probably good in some respects. What do you remember about the pre op day?
Sierra: Um…getting blood tests, meeting a lot of surgeons and doctors…
Dad: They were telling you what is going to happen and I think it is too much for a kid to process. Is it going to hurt, those type of things? Maybe Sierra, can you talk about the surgery day? Remember we had to be in the surgery waiting room at 6am?
Sierra: It was really very scary because I never thought I had a heart disease.
Dad: They get you down to the pre-op room where you are one among fifteen getting ready to go in for surgery. There are brain surgeries, heart surgeries, and all major things going on. All of them are kids from babies to kids her age. You see kids at the pre-op day, you see kids in the waiting room, you see kids right next to you and everyone is going in for something equally as major. That to me seemed like one of the scary points because that’s when things start happening. But there was a lot of waiting there and that was sort of tough. But then a team of anesthesiologists and nurses come in and then it got much better from there because they were very comforting and they gave Sierra a little medicine which we actually saw her smile before they wheeled her off. So yeah, that pre-op day and waiting to go down to pre-op that was all…pretty quick and hectic. Again any waiting time, your mind starts running crazy but that is normal.
– Sierra, age 13, and her father, Anomalous Aortic Valve
Before my surgery, they helped us through understanding the processes and what was going on and how it was going to get fixed, and we were in the know about that, and after surgery, the surgeon that performed the surgery, was very good, I guess he came in every day to see how I was doing. And Dr. Newburger kept a close eye on me which was comforting.
I mean, every bit of knowledge that I got about what was happening was comforting, because I would know what was going on, so it was really helpful.
– James, age 20, Anomalous Coronary Artery