Hi, I’m David and I was born in Fort Worth, TX, at Harris Methodist Hospital. Back when I was born, heart defects were not detected like they are today, so my family did not know there was a situation with me until I was born as a blue baby. It was quickly discovered I was born with transposition of the great arteries.

In February 2012, during Heart Month no less, my adult congenital cardiologist told me that it was time to replace my pulmonary valve via open heart surgery. This would be my second open heart surgery, the first taking place when I was nine months old. Open heart surgery felt too mysterious for my taste, even with all the helpful information provided by my adult congenital heart disease (ACHD) care team. Being the kind of person who feels most comfortable with a thoughtful plan and lots of information, I felt that I would benefit from peer support while I prepared for my heart surgery. However, what I didn’t expect was the long-lasting positive impact connecting with a peer would have on my life.

Dr. Helen Taussig, my cardiologist when I was a baby in Baltimore with a congenital heart condition, did not use a stethoscope to listen to my heart. After a childhood ear infection led to permanent hearing loss, Dr. Taussig used her fingers to feel the irregular rhythm of my defective heart that enabled her to diagnose my pulmonary stenosis.

By 1952, when I was three years old and could no longer walk and function normally, with a prognosis that I would not live much longer, Dr. Taussig convinced her Johns Hopkins colleague Alfred Blalock, the world-famous cardiac surgeon, to perform open heart surgery to repair my pulmonary valve.

I learned about ACHA in late 2013 and signed up to be a member, not realizing the impact this would have on me! In December of that year, I learned that I would need open heart surgery to implant my pulmonary valve. This would be my first open heart surgery (OHS) as an adult, so that came with a lot of fears and anxiety. Also, I had a lot more logistics to deal with since I was living abroad but would be (thankfully) flying to the US to have the surgery done, which added another layer of stress.

One of my earliest memories is of my mother reading me a book. It’s a sweet, simple memory, of a toddler curled up on her mommy’s lap, pointing to the smiling faces of Sesame Street characters.

The book was A Visit to the Sesame Street Hospital. I was three years old, had recently been diagnosed with a heart defect, and was getting ready to have open heart surgery. In a gentle voice, my mother described the kind doctors and nurses who would take care of me, the tall bed I would sleep in at the hospital, and the cool new pair of blue pajamas I would wear. I was excited to get my own hospital bracelet (with my name on it!) and to visit the hospital playroom. Learning about Grover’s hospital visit helped me to understand what was going to happen to me there—and to not be so afraid of it.

To honor Black History Month, ACHA board member Claudia Norman is sharing the history of her own CHD journey. What follows is a breakdown of her story and making the decision to increase her impact by becoming a part of ACHA.

Why was I born this way? Why does my heart race? Why are my feet swollen? Why do I suddenly just feel crummy? Whenever we’re confronted or facing a health crisis, it can be scary, uncertain and it could lead you to think “why me”?