The day I turned six, I laid on a hospital bed on the fourth floor Children’s Mercy, the cardiovascular floor, with my arms out.
Machines were plugged and taped into what felt like every inch of my body
I had been here, in this same hospital bed, for two weeks.
Two weeks was considered a fast recovery for open heart surgery, but it felt long to me. My days consisted of PediaSure and crackers that I couldn’t keep down. One time I threw it all up on my moms engagement ring, I felt so bad. Next to my bed was a little pink bell that said “ring for ice cream.” I rang it all the time.
Walking was extremely difficult for me, so my parents pushed me around in a blue wagon. One time they pushed me down to an area to pet poodles and blow bubbles. I felt trapped not being able to stand up or walk around.
Most of my time was spent in bed.
To my left, my mom held my hand, always. To my right was Mr. Monkey. This worn out, veteran of a stuffed animal has been through everything with me. Every surgery, every orthodontics appointment and every yearly check up. I wasn’t very creative with his name.
When I went in for my open heart surgery, the doctors took him with me.
They cut a small slit from his neck to the middle of his torso. Someone, or rather something, that has the same exact abnormal spot on his chest.
It was like he was a monkey version of me, down to the scar.
Mr. Monkey didn’t have to go back to kindergarten. But I did.
***
Growing up, it felt like this scar was there to point me out.
I don’t like standing out, but I always am because of my scar. It looks like a bunch of zigzags and is flushed-rose in tone. People are always curious about what happened to me. Once I was asked if I was mauled by a bear.
Now people ask less, but their eyes say a lot.
When I went back to Mrs. Wagner’s Kindergarten class, around November of the same year, the whole class sat in a circle around me. We talked about what happened to me so students were aware of my “situation.”
Talking about my heart was common in classes growing up. At Ray Marsh one year, the PE teacher had me stand up in front of the class and just stand there while she talked about Jump Rope for Heart.
Like, they were jumping for me?
I’m not sure.
I wasn’t ashamed of this defect on my chest, because it wasn’t like I could have covered it up, it was just there. On one school picture day, I didn’t think much about it, so I wore a top that showed my scar, which I didn’t do often.
That’s when I got my first school bully.
“Ew… oh my gosh that thing looks so weird. Can you cover that up?”
The second I got home, I cried hysterically. I’d never had someone comment on my body, let alone something I can’t control.
That one little, impolite comment played in my ear for years getting ready for school each day.
I would occasionally get those brief comments about how I looked —
What is that?
Are you OK?
What happened?
— and I started to ignore them.
But soon, those comments turned into self criticism.
Because I would get those remarks often, they really stuck with me. I didn’t think that there was something wrong with me, but others seemed to think differently. So if I had a top that even remotely had the pink wound peak over it, I would put a high neckline tank top to conceal it.
When I got home from school, I didn’t hear that voice. My family didn’t see me any other way, because why would they? And that’s what confused me the most; my health is my everyday life, but to others it’s out of the ordinary. An echocardiogram to take pictures of my heart was scary to others; to me it was time to just watch Nickelodeon with weird jelly on my chest.
Though it’s been ten years, I don’t go a single day without noticing my scar, or thinking about my surgery, but now it’s not always in a negative way.
Getting older, I think I’ve grown to feel more comfortable wearing whatever I want.
Still, each night I pick out two outfits; one that shows my scar and one that doesn’t.
I have to decide if I want my scar to show, or stay blended in.
I have to decide whether I have the energy to talk about it.
Regardless, every night at least my routine is the same. I tuck in bed, and I find Mr. Monkey, just like when I was younger.
Even though I’m 16, I can’t fall asleep without knowing Mr. Monkey’s nearby. At least he is always there.
What was wrong with my heart?
When you think about heart disease you probably picture a 50 something year old man who isn’t active and smokes, not a newly born baby. The reason I had to have open heart surgery was because when I was born, I was born with Omphalocele, which according to Children’s Hospital of Philadelphia, has 1 out of every 4000-7000 births.
Omphalocele is when your abdominal organs move to the outside of your body, near the umbilical cord. This occurs when the abdominal wall fails to correctly form, causing it to shift outwards. This isn’t a genetically induced condition, it just happens.
Once Omphalocele develops, things like your kidneys, heart or lungs are affected by it.
Unfortunately for me, my heart was altered. That was a cause and effect situation, and the effect was my pulmonary valve, a part of your heart that moves oxygen-poor blood to your lungs was damaged.
Mine was missing a piece, which made it difficult to run or play around, because I had to put a lot of effort into breathing.
When I was younger I used to say that I had a huge hole in my heart, now I know it really isn’t that big of a hole, but it causes lots of problems within the body.
