Spreading the Word About CHD: Deanna Power’s Story

Deanna Powers, CHD survivor

My name is Deanna, and I was born with a congenital heart defect. I’d consider myself the luckiest person in the world.

Living with CHD in the U.S.

My parents knew I would be born with a CHD. A routine sonogram went south when the technician realized that there was something wrong with my heart.

Nobody knew exactly what was wrong—just that my future was uncertain. My original due date was scratched and a C-Section was scheduled: April 1st. Everyone prepared for the worst. The ICU was prepped for my arrival, and the hospital’s waiting room was filled with a dozen of my soon-to-be family members.

I feel as though my birthday is fitting. It’s as if the months of stress my parents had to live through were alleviated, and the doctors said, “April fools! Your daughter is fine!” I was great, all things considered. My skin was not cyanotic (blue), meaning that my heart was able to pump oxygenated blood throughout my body.

After months of testing and speculation, I was diagnosed with Ebstein’s anomaly VSD. Ebstein’s anomaly is a rare deformation of the tricuspid valve between the right atrium and right ventricle. My tricuspid valve is displaced and lower than it should be. A VSD, or ventricular septal defect, means that I have a hole between my two lower chambers, allowing blood to pass between my right and left side of the heart.

I had surgery when I was 5 months old to partially repair the VSD. It went well, and I was released to live at home as a normal child, with routine follow-ups.

At age 10, I was told I could not exercise because I could go into cardiac arrest. Due to my fear of death, I immediately developed heart palpitations. At age 14, I was prescribed a mild beta-blocker to control the palpitations.

What once started as palpitations caused by stress became much more serious. By age 20, my palpitations became severe. I had upward of 50 palpitations every day, some lasting for just seconds, some for hours. Just before my 22nd birthday, I had a cardiac ablation. The surgery could not have gone better. In the months since my surgery, I haven’t had single palpitation.

At a follow-up appointment after my recent surgery, I was told that I was free to preform any exercise I wanted. I went for a run for the first time last weekend. My future is bright.

CHD – the most common birth defect in the world

NONE of this would have been possible if I wasn’t born in a country like the United States. If my mother hadn’t had access to good prenatal care, doctors wouldn’t have discovered my heart defect. Had my Ebstein’s anomaly been more severe, I could have died as an infant without anyone realizing there was something wrong with me.

If I didn’t live in a developed nation, I would not have had access to medication to help control my palpitations when they developed.

I currently live in Boston, just steps away from some of the best cardiac surgeons in the world. Had I not been here, I wouldn’t have been able to receive the ablation surgery that made my life infinitely better. If something does go wrong in the future, I’ll have access to the care I need.

Most children with congenital heart defects are not as fortunate. They do not have access to prenatal screening. They have no surgeons available to preform life-saving procedures. If they get sick, there may not be any cardiologists around to help them.

According to the Children’s Heart Foundation, 1 million babies are born with a congenital heart defect per year, and 10% of them will not live to see their first birthday. This is the most common birth defect in the world, and it is severely underfunded. The International Children’s Heart Foundation has preformed more than 7500 free surgeries for children in developing countries. They give children across the world a chance at a life as wonderful as mine.

Thank you to Deanna for sharing her story! She is a Community Outreach Manager at Social Security Disability Help. She lives in Boston, MA with her hamster.