Living With Congenital Heart Disease

Being born with Congenital Heart Disease – specifically, Aortic Stenosis – was something my parents were not expecting. My mother’s pregnancy was normal with no signs of any complications. When I was born I weighed over 8 pounds. But since my body was not pumping enough blood properly, my skin color appeared to have a gray tint to it. I was then diagnosed with having critical aortic stenosis and needed immediate cardiac surgery. I was transferred by ambulance from the hospital I was born at to The University of Michigan Hospital in Ann Arbor.

Congenital Heart Disease

 

At one day old, I had my first cardiac surgery.  I spent the first year of my life in and out of the hospital as I would go in and out of heart failure. At eighteen months old, I had my second cardiac surgery; when I was twelve years old, I had my third cardiac surgery. During that surgery, the surgeon removed a conduit I had in place, made my native pulmonary valve my aortic valve, and placed in a donor pulmonary valve. I will need surgery in the future to replace my donor pulmonary valve, but thankfully that does not look like it will happen anytime soon.

My parents made sure that I had a positive attitude and a good outlook on life when they talked about my heart condition. I was taught to look on the bright side in all situations, and they always told me that together we would do what we needed to do in order to make me feel better.

Growing up, I was able to participate with the other kids in my class – with some modifications. I was able to play T-ball, take ballet classes, and play the piano. I was able to participate in gym class in elementary school with restrictions of self-limiting my participation. Thankfully, I was lucky enough to have a best friend {and to this day I still have this same best friend} who would stay by me in gym class so I would not feel left out.

Congenital Heart Disease

In high school, I played percussion in concert band and jazz band. I also became the student trainer for the varsity football team and learned about sports medicine. I was not allowed to participate in gym class due to doctor’s order, but I must say that I never saw not taking gym class in high school as a negative.

After graduating from high school, I went onto college where I received my bachelor’s degree. A week after I graduated from college, I married my husband. After being married almost 11 years, we went from a family of two to a family of three.

Once becoming a parent myself, I definitely appreciate everything my parents did for me even more. They provided me with a wonderful childhood full of memories, and I would not want anything changed – no regrets. As an adult, I have been lucky enough to do everything I wanted to do, I just might have to go about it a different way.

Congenital Heart Disease

My hope is that children with health conditions are treated as “normal” as possible, given their medical condition. I also hope that children with health conditions along with their parents focus on the things that they are able to do and not focus on what they are not able to do

Congenital Heart Disease

Kristin and Dr. Edward Bove {surgeon who performed her open heart surgery in 1995} at Ann Arbor-Jackson Heart Ball.

Congenital Heart Disease Awareness Week is February 7 – 14th. Do you know someone who has congenital heart disease? If so, what are some of their favorite activities to do?

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