Emily - I’m living
Emily was born and raised in NY but now enjoys the warmer weather of NC. She loves Jesus, her big Italian family, her job as a special education teacher, French fries, and chocolate. Emily is a CHD survivor who lives with only half of a heart but loves with all of it.
One in 100. One every 15 minutes. No cause. No cure.
Those statistics are staggering and a little scary. But it’s the reality of Congenital Heart Defects. One out of every 100 people has one. A baby with a congenital heart defect is born every 15 minutes. There is no known cause of Congenital Heart Disease and there is no known cure.
32 years ago I was one of those babies born with CHD. Tricuspid Atresia and an Atrial Septal defect. My parents had no prior knowledge of my defects. That day my parents received my diagnosis; I became the one out of 100 for my family. At 2 months, 2 years, and 3 years old I had surgery in order to fix the defect.
No, "fix" isn’t really the right word. More like ‘put a Band-Aid on’. A very complex and expensive Band-Aid. "Fix" means it has been repaired to work like new. That’s not what happened. It doesn’t work like new but it did the job…it allowed me to live with the parts of my heart that were there and were working. It gave me a chance to beat the odds stacked against me because of CHD. It allowed me to survive. It gave me the chance to live and learn and grow, to be a part of a family and a community. It gave me a chance to share my story and to be an advocate.
And that’s what I’ve been doing all this time. Not just surviving, but living with CHD. It's not easy, living with scars on my back and down my chest. It's not easy, living with a defect inside of me. But I am living, despite the odds, to the fullest amount possible. Living out a journey that not many have lived before. Living with an experience and a story that is rare yet needs to be told. Living with the chance to maybe make a difference.
Many, many years after my open-heart surgery at Boston Children’s Hospital; I had the opportunity to go back and visit with my parents. A lot had changed since then, but few of the nurses that I had been there when I was a patient were still there. One nurse even remembered us and took us to the room of a one of her patients. I looked in the window of the room and saw a little boy, wires coming out of him and machines beeping, and his mom stroking his hair and whispering to him with a worried looked on her face. The nurse called her out and introduced me to her. She told the mom that I had the same heart defect as her son and had been a patient here as very little girl for the same surgery. And here I was now, very much alive, 19 years old, and college student in the Boston area. The mom began to cry and reached out touched my face. She told me how strong I looked and how beautiful and healthy I looked. She then looked at her son through the window and thanked us. When she went back in the room she walked over to her son, stroked his hair and looked up through he window at me and smiled. What that women saw in me that day was hope. Hope for her son, that he would recover and he would live. Hope for his future, even with CHD. Hope that all the difficulties he had faced would be worth it to watch him grow in a young man and live a full and healthy life.
And that’s why I celebrate CHD week. That’s why I wear my red and raise awareness. That’s why I (try to) eat right and stay active but listen to my body when it tells me to rest. That’s why I see my doctors regularly. Because I want to live. I want to thrive, with CHD. I want to beat the odds. I want to be a part of my family and my community for years to come. I want to share my story and be an advocate. I want to make a difference.
And perhaps maybe one day, those staggering odds will be decrease. Perhaps one day there will be a true fix. Perhaps one day there will be a cure. In the meantime, I'm living.
