Sara Engstrom - Living with Incomplete Shone’s Complex of the Heart
Sara Engstrom is 20 years old and a Biomedical Physics major with Honors at Wayne State University in Detroit. She has aspirations to go to medical school and eventually become a pediatric cardiologist. She also dreams of being an advocate for those with heart conditions because she has Shone’s Complex, a congenital heart defect. She will be walking in the Detroit Heart Walk on May 20.
I was born in May 1997 as a seemingly healthy child. At my six month check-up, my wonderful pediatrician alerted my parents that she could not feel my pulse in my feet and that I needed to be seen by a cardiologist. At seven months old, I had a heart cath to explore whether I needed open or closed heart surgery. I had an echocardiogram done and at eight months old, I had closed heart surgery. My pediatric cardiologist found I had an aortic coarctation, which was repaired, a parachute mitral valve, and a bicuspid aortic valve. Since my surgery to repair my aortic valve, I have had annual visits with a cardiologist. I am now seen by an adult cardiologist at Beaumont Hospital. At 17 years old, he found that I also had a persistent left superior vena cava. About one year ago, I had a significant amount of heart palpitations and was put on my first beta blocker for precautionary reasons. Otherwise, I am relatively healthy and have minimal restrictions.
Although I am not restricted in my activities, I still suffer from over-exertion. After climbing up too many stairs, I get tired, and I can’t run on a treadmill for too long without feeling exhausted. This sudden exhaustion is a brief reminder that I have a heart condition, and that saddens me. It saddens me because I am unable to change the way I was born. I am sick, and no one can change that. These feelings create a feeling of low self-esteem that many people with chronic illness know all too well. The one way that I always make those feelings go away is to remind myself of how far I have come and how lucky I am to have come this far and be so healthy.
Because I am fortunate enough to have the life I do, I want to do whatever I can to help others with congenital heart defects. The drive to change the lives of others - even if it is just one person - has motivated me to be an advocate for myself and for others. I am supporting the Detroit Heart Walk because I want others, especially young children with heart conditions, to know that they are not alone in their journey. I feel that it is important to let others with heart disease know this because it is a confidence booster. Personally, learning other people’s stories has lifted my confidence in a way I never imagined. If you have heart disease, you are not alone. You have a whole community of people here to support you.
