THE BLOG

I Haven't Let Heart Disease Stop Me From Enjoying Life

02/12/2015 08:17 am ET | Updated Apr 14, 2015

By: Betty de Aragon

As we are celebrating Congenital Heart Defects Awareness Week, I am proud to share with you my survivor story.

I am a 45-year-old woman who was born with Tetralogy of Fallot, a heart problem consisting of four serious defects. I was a "blue baby," because my heart defects kept my blood from getting adequate oxygen.

My diagnosis came several months after my birth, and I was lucky to get it. At the time, my family lived in Puerto Rico, and a family friend vacationed there. He was a pediatric cardiologist at Boston Children's Hospital and made the diagnosis.

My parents took me to that hospital for her first open-heart surgery. A Blalock -Taussig shunt was placed to help my heart increase blood flow to my lungs. I was just 18 months old.

At age 5, I returned so my heart's function could be corrected even more.

Throughout my life, I regularly saw a cardiologist until I was 20, when I believed my condition was "fixed." A decade later--as a way to encourage my husband to seek treatment for high blood pressure--I offered to see a cardiologist. My surprise was to learn my heart still needed monitoring.

I then resumed annual heart checkups with a cardiologist, but otherwise went on with life as usual.

When I was pregnant with my first child, I received conflicting medical advice from my doctors. My obstetrician had never had a patient with a congenital heart defect. My cardiologist had never had one who was pregnant.

My pregnancy and birth of my daughter--done by a scheduled Caesarian-section--went fine. Afterward, however, both practitioners dropped me as a patient.

That was fortuitous; it prompted me to find doctors who had had more expertise in my condition. When I was pregnant with my second child, a heart test showed my pulmonary valve was straining and would eventually need to be replaced.

The doctor asked me if I got light-headed or dizzy when I stood up and I said, 'Doesn't everyone?'

Two years later, in 2007, I had the valve replacement--my third open-heart surgery. I have remained healthy since then.

After my surgery, I could carry both my kids and not be out of breath.

I know I'll likely need a valve replaced again at some point. I see a cardiologist twice a year and maintains a healthy lifestyle.

Because I was born with a heart defect, maintaining a healthy lifestyle is just part of my daily life. From the time I was a child, my family limited salt as part of a heart healthy diet, modifying favorite Puerto Rican recipes as needed. Physical activity and moderation in physical exertion are also longstanding practices.

I was born with this, so this is my normal.

Taking care not to exceed my limits hasn't prevented me from enjoying life.
I have to listen to my body, but I've done everything I've wanted, including skiing and dancing until dawn.

After my valve was replaced, I have gotten better at managing stress.

I keep in mind that life is fragile and I want to take advantage of all those little moments with my kids.

I encourage people to adjust to heart health just as they would something like poor eyesight--but not let it define them.

I may not be able to run a marathon, but I can still go out and play with my kids.

My condition has given me the courage in tough times. I think, 'Wow, I've survived three open-heart surgeries. I'm stronger than I thought I was.'

I always felt a strong connection to the American Heart Association.

I'm very passionate about it. If it wasn't for the research the AHA does, I may not have been able to survive.

Up to 1.3 million Americans alive today have some form of congenital heart defect, and in the United States alone, approximately 36,000 children are born with a heart defect each year.

Find out what things about congenital heart defects you should know as a parent to allow you to be your child's best advocate.

You can also find information, resources and tips for taking care of a child with congenital heart defect by clicking here.

Learn more about heart disease prevention and healthy living tips by making a change at GoRedForWomen.org and GoRedCorazon.org.

This February is American Heart Month, join the Go Red For Women movement and wear RED.

Betty de Aragon is a national spokesperson for the American Heart Association's Go Red For Women movement.