I remember everything

Ethan Byron

My mom has told me about what I was like when I was born. I was born with a heart defect where I had a large hole in my heart and both my main arteries pumped blood from the same chamber.  This means my oxygenated and de-oxygenated blood would get all mixed together and my heart had to work really hard to get enough oxygen to the rest of my body.  My mom says I was really, really skinny and had failure to thrive.  She said she had a mission to feed me 17 ounces of formula a day.  This was hard because eating took a lot of energy and I would fall back to sleep after only a small amount.  Also, the medicine I was on sometimes made me sick and I would throw up what I ate.  But I know my mom and I know she never gave up.

I don’t remember my first open-heart surgery. I was only 5 months old.   I was in the hospital for 8 days afterward.  The doctors told my mom that they fixed my heart defect but there was a small chance I would develop a complication called subaortic stenosis.  Exactly 12 months later I had my second open-heart surgery to clear out the passageway to my aorta from the subaortic stenosis.  I think I can remember bits and pieces of my second open-heart surgery when I was 17 months old.

I developed subaortic stenosis again but this time it took years to get bad enough to need surgery again. I remember what it was like before the surgery.  It was hard to breathe.  I couldn’t run much and had to sit down a lot when my other friends were playing.  My lips and fingernails would turn blue.  I had my third open-heart surgery at 6 years old and I remember everything.  I was terrified.  I remember when my doctor told me I needed open-heart surgery and I didn’t believe him.  I asked my mom if it was a joke.  I knew they were going to cut me open with a knife.  I remember when I laid down on the operation table and they gave me the mask to put me to sleep.  I knew what was going to happen and I didn’t think I was going to live through it.

And the next thing I remember is when I woke up. I remember how supportive my community was.  Family, friends, doctors and teachers would visit me.  My whole class made me get well cards and gave things for me to play with while I recovered.

I’ve grown from my surgeries. I am able to breathe better and be active.  I only have to go to the cardiologist once a year now and do not have to take any medications.  My doctors say my heart looks very good.   I’m growing really well and I’m already 5’7”.

I feel more confident with my defect. It’s part of me.  I am still a little afraid that someday my heart may stop working.  I deal with that fear by talking about with my family.  I realize I have really good doctors who I trust.  They have always taken care of me.  I try to live a normal life.

The American Heart Association has helped me see that I am not alone. It has shown me that there are other kids just like me who have gone through a similar experience.  This group of kids is called the Cardiac Kids.  They make me feel more accepted.  The American Heart Association has also helped me see that I can help other kids who are like me and help them feel supported.  Participating in American Heart Association functions make me feel like I am giving back to the association and am part of a community.