Living with Other Types of Congenital Heart Defects, Missy

Missy’s Story - In her own words

Missy early after surgery and later after surgery

Ongoing, appropriate medical care can help children and adults with a congenital heart defect (CHD) live as healthy as possible. Missy was born with a CHD. Read below to learn how her commitment to lifelong care for her CHD has helped her live a healthy life.

My name is Missy, and I’m a congenital heart defect (CHD) survivor. I was born with aortic stenosis, bicuspid valve. This means that my aortic valve, the heart valve that controls blood flow from my heart to my aorta, was narrow and only had two flaps, instead of the normal three flaps. This condition affected the way blood flowed out from my heart to the rest of my body.

Although my mother knew I had a CHD since I was a baby, I was not aware that I had any heart condition until 6th grade when I was participating in physical education class. I suddenly got dizzy and almost passed out. It was then that my cardiac care began. My first procedure was having a heart catheter put in place to help with the blood flow through my heart.  Shortly after I turned 12-years-old, I had open heart surgery to repair my aortic valve. Throughout the rest of my adolescence, I had regular checkups with my cardiologist (my heart doctor).

When I was nearly 20-years-old, I had my second open heart surgery—this time, it was to replace my aortic valve. I was given the option of a pig valve or a human valve from a cadaver, which was a new procedure in the late 1980’s. The latest research had indicated that the human valve would hold up better during pregnancies and potentially last longer than the pig valve option. Therefore, I chose to have the human valve replacement. The surgery went well. Shortly afterwards, I began a career that I loved and met my husband. I had two healthy pregnancies resulting in two healthy children.

When my youngest was 3-years-old, I had my third open heart surgery to replace the aortic valve again. This time, a mechanical valve was placed in my heart. Again, I did well with this procedure. I had to start taking some medication to help me, but overall, I led a normal, healthy life, and I felt good.

Then, on one of my annual cardiac checkups, my doctor found I had so much scar tissue buildup in my mechanical valve that it was not working. I had no symptoms. I was only diagnosed because I kept my annual visit to see my cardiologist. Shortly afterwards, I had my 4th and hopefully final surgery to replace that valve again.

My experience underscores the importance of continued care for all CHD patients. CHDs are never permanently fixed. Continued follow up care is critical.