Grown-Up Heart Kids: What I Wanted To Tell My Parents, But Didn’t

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When we were kids, we had secrets we kept from our parents. It’s normal, and heart kids are no different. 

Regardless of whether it’s because they’re scared of their parents’ reaction, or just because they don’t know how to tell their parents, keeping secrets isn’t usually malicious—it’s just part of being a kid.   

We asked adults who grew up with congenital heart defects (CHD) about what they wanted to tell their parents when they were young…but didn’t. I hope their stories are helpful for parents who want to be there for their heart kids, but don’t quite understand how they’re feeling.

Here are 8 of the great responses we received:

1. Don’t Sweat It.

“After recess in first grade, I used to change my sweaty T-shirt in the coat closet so that no one would see my scar.”


2. Told ‘Ya.

“When I had my surgery, my mother was told I wouldn’t live past age 6. When I was 6, they told us I wouldn’t go past 10. By the age of 10, I wouldn’t get past 16-18. And my doctor tried to convince my mother that putting me through college was a waste of money because I’d never finish it. The day I got my degree, I went to that man’s office and rubbed it in his face—it was one of the most satisfying moments of my life.”


3. It’s Not Always About The Heart.

“I have two stories.

“First one is, my parents attributed everything to my heart condition, and often forgot that I was also a normal kid. The movie ‘E.T.’ scared me. My mom thought it was because of the glowing heart. No, it was because he was a waddling alien!

“The other is that I went on Coumadin when I was 10 years old. From that point on, if I didn’t want to eat my grandma’s cooking, I told her I couldn’t because it interacted with Coumadin. I skipped corn for 12 years.”


4. Hiding The Heart.

“It drove me nuts that everyone treated me like I was a fragile little flower. Yes, my heart defects are a rare combination, and I might not have been able to keep up. But I always saw kids who were worse off than me in the hospital, so I hid my condition from everyone I could. (I still do).”


5. The Wild, Wild West.

“I was born in 1969 with transposition of the great arteries (TGA). It was the Wild West back then. My parents and I had almost no support back during the ’70s. One of my very first memories is a doctor telling my parents—not me—that I wouldn’t live to be 5. It was weird how the feelings of a scared, young child were almost completely ignored. The good news is, it’s not like that now. It’s a whole new—and much better—world for the kids with CHD today.”


6. Hunger Pains.

“I remember getting prepped for an angiogram when I was about 9. I was in the playroom, and all the children got called for breakfast, so I duly followed. I ate the biggest pile of gorgeous buttered toast, orange juice, etc.—so yummy. Unfortunately, I had no idea what the ‘nil by mouth’ sign pinned to my bed actually meant. I paid for it though—on the way back from the procedure, I vomited like I never had before.”


7. The “Hole” Story.

“I hated my gravelly voice and my tracheotomy scar for a long, long time. Not because the scar was there, but because kids at school would constantly bother me or tease me about it. For years, they would ask if I could smoke a cigarette through the hole in my throat. It got really annoying being asked that over and over.”


8. In The Long Run…

“As I grew up, my parents were quite protective about me doing sports in school, but I wanted to be able to do what everyone else was doing. It was frustrating to not be able to do anything. I’d get upset when I saw kids playing and I just couldn’t do it.

“I did cross-country and rugby. I collapsed a couple of times, but hid it from my parents because I wanted to be like everyone else, and built up my heart as much as I could. I loved sports and nothing was going to stop me. It helped in the long run, as it kept my heart a lot healthier—but I did have a few near misses!”


Please share your thoughts in the comments below.

Also read:

Facing Tough Times: Words Of Wisdom From Adults With CHD (Part 1)

Stories From The Heart: Growing Up With A Congenital Heart Defect



Sean Akers

Hi, I’m Dr. Sean Akers, and I’m a Licensed Clinical Pediatric Psychologist at Children’s Hospital & Medical Center in Omaha. I serve as the primary psychologist for the heart transplant team as well as the coordinator of the Consult Liaison Service. My job is to provide heart kids and their families with support throughout their journey.

2 Responses to "Grown-Up Heart Kids: What I Wanted To Tell My Parents, But Didn’t"

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  1. Pingback: Heart Kids: Advice I’d Give My Past Self About Having A Baby With A Heart Condition (Part 2) - smallbeats

  2. Adam Kennedy

    April 5, 2017 at 8:51 pm

    I had ‘hole in the heart’ surgery in 1973. My parents always encouraged me to play sports and be active. Looking back now as a father (47yrs), I realised how supportive they were. As a kid, I couldn’t understand how worried they must have been, but they never showed it! I loved showing off my zipper as a kid and am proud of it! I look at these photos of kids with their zippers and they are little fighters!


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