Sep 15
Billy97
Billy97 , Posted on SUPPORT NETWORK Blog

Living with Hypo-plastic Left Heart Syndrome

Story image

Hello, my name is Billy and I was born with a congenital heart defect called Hypoplastic Left Heart Syndrome on March 28th, 1997. At only a few days old I was given a very slim chance of life. With over a 70% failure rate, my parents were given an ultimatum of whether or not to even try. Luckily, they did and 21 years later I am deciding to share my story. My story isn't about surviving my heart condition, it's about living with it.

Between the ages of just a few days old and three years old, I underwent three open heart surgeries. While I myself cannot recall a lick of the experience, stories told to me by my parents and other loved ones paint a vivid picture of how trying and uncertain those days were. At the time Hypoplastic Left Heart Syndrome was rare so a lot of my treatments were experimental. I can only imagine how hard it must have been on my parents, especially with very little to no support system. My family was very supportive, what I mean is a support system like the one that the AHA provides. Besides the uncertainty with the experimental treatments and the rare heart condition, even if I did survive the surgeries, doctors were certain that I would not have a normal life.

At the age of 4 I was riding a bike, 2 wheeled. By age 6 I was in little league and I played until high school. Between the ages of 11 and 14 there weren’t very many places that I didn’t go on my bike. This includes a 105mile bike trip that I went on with my summer camp in the 8thgrade. This wasn’t some bike trip of kids. 105miles over 4 days up and down hills and mountains throughout upstate New York. At night we slept in tents and cooked our food over a fire. Rain or shine we were up with the sun pedaling away and it was so freeing. It was an experience that made me realize I can do anything I set my mind too. I tell this story because I was never supposed to be able to do something like that. My parents were warned by doctors that I would never be able to keep up with other kids my age. The fact that I did that proved that they were wrong.

After high school I moved to Los Angeles for a couple year where I attended university. While out there I did like people from California do and went on a lot of hikes. The last one I did was two years ago. The hike to the Hollywood sign, which anybody who knows about it knows that it isn’t easy. I went up the hard way that takes you past the wisdom tree as well. I don’t want to come across as braggadocios, but I am 6’ tall and weigh 185 pounds and all that is running on a heart that was scraped together using spare parts. I take pride in the fact that I am capable of doing the things I can do simply because I was told I couldn’t.

“Never be ashamed of a scar, it means that you were stronger than whatever tried to defeat you”. This is truly one of my favorite quotes. My chest looks like a football playbook. With exes and o’s carved into me and giant line that divides my chest down the middle draws a bit of attention by the pool or at the beach. There wasn’t a day that went by in the summer where somebody would ask me about my scars. I hear that a lot of people are ashamed of their scares, but I viewed myself as sort of a rock star. Although it is scary being different as a kid, I loved the fact that it made me different. The best part about it was I could make up any story I wanted about why I had the scars. I would tell people that I was attacked by a great white shark or that I was a robot and the scars were where they put me in my human body. I found it a lot easier to tell a crazy story then try to explain what was wrong with my heart because I wasn’t 100% sure either. It was also fun to freak out the other kids. To this day and for the rest of my life people will ask me about my scars. My advice to a kid with a bad ass scar is to own it and embrace the fact that it makes you different.

I am currently 21 years old. I have taken a break from school to figure out what I want to do with my life. Currently that is the biggest obstacle I face. I have done most the stupid things that most 21-year old’s do. A few rough nights and even some tougher mornings. I go out, dance and have fun. Despite the odds, I live a normal life and I am so grateful for that. There isn’t a day that goes by where I don’t think about how lucky I am and that thought pushes me to do more. So in the spirit of doing more, I am putting myself out there in hopes that this this may help somebody else.

 

2 Comments
  • Billy97
    Billy97,

    there were no pictures of my self on my computer small enogh to upload

  • AHAASAKatie
    AHAASAKatie,

    HI Billy97- thank you for sharing your story with us! If you email me@ SupportNetwork@heart.org with the photo you want to use for your profile picture I can fix the sideways image for you. Best Katie. 

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