Heart Experience Journal – Ryan Family | Boston Children’s Hospital


I was born with coarctation of the aorta
and VSD, so I’ve had a pacemaker since I was four years old and I’ve had two pacemaker replacements since then. She was born with a heart condition so when she was younger we actually spent a lot of time talking to doctors about when we should introduce Emily into various aspects of her heart condition. And at first you know we kept things very simple, we didn’t want to frighten her or give her too much information that she couldn’t comprehend but you know there’s always a balance and it’s a question I think of trying to figure out what’s best for your child knowing their personality. As a child gets older and more mature, they take a little more ownership. It’s hard when you’re younger to talk about surgeries, so one thing that my parents did that was really helpful is they got me a bunch of fake medical equipment so like all these plastic stethoscopes and stuff like that and I think that was really helpful because it helped me become more comfortable with medical equipment so when I would go to the doctor, I kind of knew what that was and it wasn’t as scary. I think it’s also important to not make kids feel like they’re super
different from anyone else and that they can accomplish their goals. I wasn’t allowed to play contact sports just in case like there was a blow to the pacemaker. I used to play soccer and I had to stop. My doctors are always very encouraging about me still staying active. I think that finding track and a
sport that I was good at was a big confidence boost for me. I’ve kind of made it like my mission to prove people wrong and prove that just because you
have a congenital heart defect doesn’t mean that you can’t be active and you can’t do things and participate in athletics or be outdoorsy or do whatever you want to do, obviously within reason. The kind of revelation for me has been
that despite having, you know, a fairly serious heart ailment, Emily’s led just a very fulfilling life. I mean she’s excelled at track, she’s a competitive cross-country skier, she’s an outdoor leader in college, so she’s done a lot of things and you know, it just highlights the fact that you can really overcome so much. I think as a parent, you just will hopefully want to provide
the environment where they can do that, and they can be themselves and they can realize their full potential.

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