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The Medical Trauma I Experience From Congenital Heart Disease

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I thought I was going to burst into tears right there, I didn’t though. I held back my tears, not wanting to draw attention to myself or away from my grandmother, who was laying in the ICU bed with a fresh scar on her chest from a valve replacement. You might assume I was just a worried granddaughter, but truthfully, I wasn’t worried. I was 100% confident my grandmother was going to be fine. The way she and the room looked, I didn’t even realize we were in ICU at first. It was so strange seeing that familiar hallway, even though we were in a different hospital. I wasn’t even the patient this time. I knew I was fine and that nothing bad was happening. Even so, I was overcome with an emotion I still can’t quite explain. Great sorrow? Fear? Such discomfort? A reminder of the memories so deep in my brain I have to fight to remember them?

Some refer to it as muscle memory. Even if I don’t remember the exact memory, my brain remembers certain elements of the memory, such as the setting, scent, or feelings. It tells me I’m in danger, even though I’m not.

About a year later, I was using rubbing alcohol to get the sticky residue from the heart monitor off of my skin. When I breathed in, the scent followed, and I was momentarily brought me to the doctor’s office, about to have my blood drawn. It took me a second to snap out of it. It was a weird flashback I didn’t see coming.

Then, nightmares started occurring every so often. I’d wake up, concerned about my scar from open heart surgery, only to realize I was not in a hospital bed, but my own bed.

Between July and December, I had so many doctor appointments. Each one went well, yet, I found myself crying after most of them. I’d cry in the car, or I’d hold it in until I was home. I couldn’t explain why I was crying, and truthfully, I still don’t know why.

I recently learned that glow in the dark stars are a reminder of the hospital room I stayed in for one night when I was 11. I don’t want glow in the dark stars anymore.

Yesterday, I got an appointment reminder in the mail. I was slightly disgusted with it at first, despite adoring my cardiologist. And this morning, I saw a picture of a hospital room and felt a discomfort for reasons I can’t explain.

Medical trauma is real. For the sake of children growing up with serious health issues, we need to start addressing this. We have amazing doctors and nurses to address the physical issue. We need more emphasis on Child Life Specialists and pediatric therapists, who are wonderful and help children understand and process their health issues and all that accompany it. We need to address the emotional problems that accompany the physical ones.

Surgeries and medications didn’t fix my heart. I’m still half-hearted. Procedures, tests, and appointments will always be a part of my life. I’ve always been OK with that. Why I randomly started experiencing these triggers, discomfort, and pain recently as opposed to the first 19 years of my life? I don’t know. Some think it’s the recent change within my medical team. Some chalk it up to the test ran in August as being the initial trigger. Both make sense to me, and both are likely correct. Why it chose now though, when the changes and tests have both happened before…I don’t know. But this is medical life.

It has its trauma, and it has its beauty. It has its scars, both fresh and faded, both physical and emotional. It’s not something I signed up for, but I oddly feel blessed to be a part of it. Because there is a lot of good with it.

I may have only half of a heart, but I am living wholeheartedly, scars and all.

Photo credit: cindygoff/Getty Images

Originally published: March 19, 2020
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