Hilary living with Transposition of the Great Arteries and minor Stenosis of the Aorta

Hilary living with Transposition of the Great Arteries and minor Stenosis of the Aorta

Hilary contacted CHD-UK in regard to her personal story and we thought which is in CHD-UK’s 3rd Edition E-newsletter (April 2009)

Hilary is the 14th Person in the WORLD to have had the Switch operation for Transposition of the Great Arteries (TGA).

Hi my name is Hilary Molenda I was born in February 1992 in Park Ridge Illinois. I was the first child of Mike and Mary. Shortly after I was born; I turned blue and had difficulty breathing. It was at that point that my parents were informed that I was born with a “broken heart”. After much medical diagnostic testing, it was determined that I had transposition of the greater arteriesof the heart.This is a condition in which the two main arteries (one carrying oxygenated blood to the body / one carrying oxygenated blood away from the body) of the heart are in the wrong spot, thus transposed. At three hours old, I underwent a cardiac angioplasty to reopen a small hole in my heart to allow oxygen to travel to / from my heart. It was the beginning of my life long battle with congenital heart defects.

Three days later I underwent open heart surgery. This procedure was the arterial switch. The surgeons switched the two main arteries of my heart, the pulmonary and aorta to the correct spots. The largest artery that the doctor switched was 3/8 inch in length. The surgery was a new procedure, only approved by the FDA in 1990. I was the 14th person in the world to have this surgery. I remained in the hospital for one month, recovering from open heart surgery. I was discharged to home with a large amount of cardiac medications.

On October 8, 1993, I underwent a cardiac catheterization to fully examine my heart. The doctors realized that I had a minor leak in the area where they switched the arteries. In addition, I had minor stenosis of my Aorta. The leak and stenosis were minor, so the doctors decided that I did not need any cardiac medication.

My childhood differed greatly from my typical peers. My activity level was limited and I was unable to participate in any competitive sports. When I became ill, it was a major concern. I spent many days in my childhood on a lot of medication to combat any infections from settling in my heart. I underwent many tests that children typically do not have to do. My family worked hard to give me a typical childhood. However, I was often going to the cardiologist or in the hospital when other children were playing and having fun.

As a teenager, I began to develop symptoms of congestive heart failure. These symptoms included shortness of breath, palpitations, and being constantly tired. In 2008, the cardiologist decided that I needed to wear a holter monitor to measure my atypical heart rate. I wore this monitor to school and other activities. The results of the halter monitor lead to further testing, including a new procedure, an echnographic MRI. The MRI revealed that I now have a moderate pulmonary and aortic leaks and moderate aortic stenosis. I now will be followed by my cardiologist more frequently.

There are many things that I wish I could do like skydiving, riding roller coasters and running a marathon. I cannot do these activities because of my heart condition. I am very limited in what I can do and this bothers me terribly. It is hard for my friends to understand why I cannot participate in certain activities. Congenital heart defects are not obvious, so people do not realize the disabling effect that they have. I am a survivor who will fight for my whole life. However this battle is very difficult. I struggle daily from emotionally and physically dealing with my heart defect.

I often think about being a survivor of congenital heart defects and how my life is forever changed and different from my peers. I feel strongly that I have been given a significant purpose in life. My mom says that I was chosen to endure these challenges so that I can grow, develop, and change the world one heart at a time. My situations have made me stronger. These situations have made me appreciate and respect life at all levels.

CHD-UK writes: Such a lot to happen to someone so young but every CHD’er is a fighter.

Written by Hilary Molenda
Hilary Now