Adult Congenital Heart Disease Program

Patient Stories | Rebekah and Ebstein Anomaly

How Finding the Right Heart Specialist - Close to Home - Changed Rebekah's Life

Congenital heart disease is the most common birth defect in the United States. Today, there are roughly 1.3 million adults living with the condition, known as ACHD, or adult congenital heart disease. And Rebekah Decker is one of them.

“My parents found out something was wrong when I was born,” she said. “I came out blue.” 

Rebekah was diagnosed with Ebstein anomaly, a rare congenital heart disorder. It occurs when the tricuspid valve—the valve that separates the right atrium from the right ventricle—is incorrectly formed and positioned lower than usual in the heart. As a result, it doesn’t work properly. Blood can leak back through the valve, causing the heart to work less efficiently. The condition can lead to an enlarged heart and heart failure.

Rebekah, 36, had several surgeries and procedures when she was younger to treat the condition. Then she let her care lapse—due to a combination of her pediatric cardiologist retiring and not finding an adult cardiologist she could trust.

“I went to a cardiologist who knew nothing about Ebstein anomaly, so I didn’t go back after that first visit,” she said.

The Importance of Regular Treatment

Lapses in care for ACHD patients can be problematic because the treatments they had when they were younger can stop working effectively. Often, repair procedures are needed, such as fixing or replacing valves that are outdated or no longer functioning as they should. Adults with the condition also are prone to complications, such as heart failure and pulmonary hypertension, or high blood pressure in the lungs.

In addition, women with ACHD typically face more risks during pregnancy because of the changes taking place in the cardiovascular system during that time.

For these reasons, the “gold standard” of care for adults with the condition is regular follow-up and treatment by specialists trained in ACHD. Yet, among adults born with a heart defect, less than 20% receive the kind of specialized care they need.

ACHD Symptoms in Disguise

A few months into Rebekah’s marriage, when she was in her early 20s, her ACHD came back to haunt her. It started with severe upper stomach pain. 

“I wasn’t able to eat,” she recalled. “I was throwing up constantly and having migraines all the time. I was pretty much at the end of my rope.”

Rebekah went to the doctor. Tests determined the problem wasn’t her stomach — it was her heart. She was shocked: “Nothing made me think it was my heart. I honestly thought it was a bowel obstruction.” 

She called her retired pediatric cardiologist’s office and asked to see someone. That’s how she met Craig Alexander, MD, a physician specializing in ACHD. Dr. Alexander works in the Cincinnati Children’s ACHD Program at our Greater Louisville and Western Kentucky locations. Cincinnati Children’s ACHD Program is one of the first centers in the country to earn accreditation from the Adult Congenital Heart Association (ACHA) as an ACHD Accredited Comprehensive Care Center.

“Dr. Alexander told me he believed my pulmonary valve had disintegrated and needed surgery to be replaced,” Rebekah said. “It was a serious situation at that point. I was dying and didn’t even know it. I guess I’d let it go for so long because I didn’t realize it was my heart. It taught me that it can still be your heart, even if the symptoms you’re having aren’t in your chest.”

Living the Dream of a Joyful, Fulfilling Life

Rebekah had surgery in May 2016. “My life has been completely different ever since that moment,” she said. “I’ve had ups and downs since then, but as someone with congenital heart disease, it’s always going to be like that—and for the most part, they’ve been ups. I’ve been able to have two kids. I feel very blessed.”

Rebekah lives in Laconia, Indiana, with her husband, Matthew, two sons—5-year-old Brantlie and 3-year-old Bentlie—and two dogs. She only drives about 45 minutes every three to six months to see Dr. Alexander in Louisville for routine checkups. She also sometimes travels to the Cincinnati Children’s Burnet campus location for tests and procedures, as needed.

“I believe God puts people in your life for certain reasons,” she said. “Dr. Alexander was so knowledgeable about my diagnosis. He was a piece of saving my life.”

For the past 11 years, Rebekah has worked for Humana. In her spare time, she helps others with ACHD.

“My parents never put limitations on me despite my condition,” she said. “If I wanted to play softball or start cheerleading, they said, ‘OK, let’s try it.’ I think that’s been a huge part of why I’ve been so successful in life. My parents always gave me a chance, and the choice. I’ve never let congenital heart disease define me. I want others with the condition to know that they can have a joyful, fulfilling life.

“I always tell people I’m living the dream they said I would never have,” Rebekah continued. “I’ve been married going on nine years, and we have two wonderful boys. We bought our dream home in 2020. We have property and go camping and are thinking about buying a boat. We have an amazing life.”

Dr. Alexander also credits Rebekah’s positive outlook for her continued success.

“How normal her life is, that’s a tribute to who she is,” he said. “Even when she has bad days, she takes care of her kids, she works, she pushes on. And when we look at our adult congenital patients, having that spirit of pushing through the bad times goes a long way.”

(Published May 2023)