My name is Johnathan and I was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) in the womb in 1994. This news came to my family after my mom had lost two other children to this same congenital heart defect. At only three days old, was my first heart surgery.
After spending weeks in the hospital, I was not expected to survive. Since then I have had two more open heart surgeries. Thanks to Dr. Henry Wiles at the Children’ s Hospital of Georgia for his support throughout my lifelong journey.
My two sisters born with HLHS who passed away were brought home, would barely eat and were then taken to the hospital to find out there’s nothing they could do. We have a record somewhere in Philadelphia for having three HLHS children in our family. I now have two heart healthy brothers and myself, along with my mom and dad whom I am so thankful for. I cannot imagine my life without having such a supportive family.
One of the areas I struggled the most with CHD was being bullied. In high school both boys and girls would call me names, hit me, push me, and throw food at me. At lunch they would throw food, milk cartons and stuff like that at me. In the classroom they would throw pieces of paper and paper balls at me. They would hit me in the back of my head during class with a ruler or text book. They'd do it so fast I wouldn't know who did it. The teacher told them to stop and leave me alone and would even speak with them, but they kept doing it anyway.
I graduated from high school two times because my first diploma was my Special Ed Diploma. I was supposed to go to University of South Carolina but instead I went back to high school to get a regular high school diploma and got to graduate. So, when I went back…the bullying started again. Same stuff – name calling, hitting, pushing, throwing things at me in class and at lunch. Making fun of me for not going to parties or drinking, and calling me things like “Pizza Face” “Freddy Krueger” and “Holy Roller” because of my faith and not going to parties. I would tell them no I don’t want to go to parties because of my congenital heart defect and I don’t want to do anything that will hurt my heart. Most of the girls were just as mean, they’d pick on me along with the boys and give me ugly looks in the hallways.
Kids would also say I am a waste of time and won’t amount to anything. But now one of these guys and I are friends because he understands why I couldn't do things he could do and he apologized for being so mean to me in the past.
The worst day of being bullied was when a boy threw a pencil in my eye. Yes…it actually made it in my eye then the pencil popped back out. I had to have surgery on my eye and still to this day half of my eye is missing at the bottom. If you look at me directly on you can see it. The school only gave him one detention as his discipline.
I did have one close friend and he was the only person that was nice to me. He'd say something when he saw someone doing wrong and treat me the right way. He even hung out with me outside of school. He'd spend the night and we'd hang out and we'd go see movies and get food. He was very very nice but unfortunately he moved to Atlanta, but we are still in contact almost ever day!
Since bullying is really hard to go through I did have depression and struggle with it for a long time. Being bullied you get depressed pretty much a lot and some days I'd come home and cry to my dad about being bullied. He'd always tell me, “people will never get how you are and what you go through.”
There were days I felt like what people were saying was true, maybe I'm really not worth anything and I have felt so alone I've wanted to take my own life. I thought about cutting myself but I never did anything like that. I did not ever go on an anti-depressant or have counseling. My faith and my family helps me get through hard times.
Whenever I had a problem I'd talk to my dad about it because we are very very close. He'll hurt with me too and help me through it.
I'm glad I have the parents that I have. If I didn't have the parents or the support system I have and a family that cares I don’t know what I’d do. When I'm hurting they're hurting. We have a special bond.
Currently I still struggle with things like being told I may need a heart transplant. I would ask my dad things like, “Why does it have to be me to go through these heart problems and all of these situations? How am I supposed to cope with this? If I have a heart transplant what happens if it goes wrong and something messes up what happens then?”
My dad always says to "put it in God's hands if he wants you home, you'll go home and if he wants you here with us you'll be here with us. No one is guaranteed tomorrow.”
So for now, I'm thankful I'm still here and doing as well as I am. I share my story with my church and community and would love to be a strong voice for the CHD Community like Stephanie Romer who created CHD Legacy. Thank you Stephanie for helping me with this story and for publishing my story to help others know they are not alone. If anyone is interested in my help in their CHD projects please contact me at: email@example.com
My advice to anyone out there reading this is to count everyday as a blessing. Never give up, look at the positive, and take one day at a time. I would also say to Adults and Parents to get involved with support groups to help you know and learn about Congenital Heart disease we need people to learn what it is we warriors can’t educate alone we need your help!
**if anyone reading is in South Carolina and would like to connect, please reach out to me!
HLHS, 25 years old
Related Blog with Bullying Resources: Bullying Kills