A broken heart for Valentine’s Day sounds like the plot of a romantic comedy. But for Rebekah Holl, a literal broken heart was her reality on Feb. 14, 2019. Born with a rare defect called d-Transposition of the Great Arteries, she underwent open-heart surgery as an infant to correct the way blood circulates throughout her body. Though rare, congenital heart defects are the most common form of birth defects – affecting about 1% or 40,000 births per year in the U.S.
Thanks to advancements in treatment, babies born with a heart defect are living long and healthy lives. The treatments needed to control their condition do not always end with childhood, though. This is where Poyee (Pansy) Tung, MD, an associate professor of cardiovascular medicine at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth), comes in.
As the medical director of the UT Physicians Adult Congenital Heart Disease Clinic, Tung understands the complex issues this patient population faces as they grow up.
“These patients are born with very complex anatomical abnormalities that change as they grow. Coupled with life changes such as moving away that occur during the transition to adulthood, the handoff from pediatric to adult care can get lost in the mix,” Tung said. “Plus, they just aren’t kids anymore; they have adult issues to deal with now – which can mean anything from pregnancy and childbirth to other aging-related health issues.”
Hospitals and doctors are nothing new to Holl, who is a nurse. However, due to the common belief that treatments for these conditions are limited to pediatrics, Holl didn’t even realize there were nonpediatric physicians who treated congenital heart conditions. She first met Tung when she made an appointment to find the underlying cause of her heart palpitations and low heart rate.
“I was weaned off my medication to ensure accurate testing, and I was at work and feeling a little strange. I called Dr. Tung’s office to let her know my heart rate was pretty high and left a message. Within five minutes she personally called back,” Holl said. “I ended up going to the emergency room, and was then transferred to the hospital. Once there, she walked in and reassured me that she had a plan.”
What came next was a procedure to place a catheter and a pacemaker on Holl’s heart.
To Holl, the care Tung provided healed her heart in many ways – both medically and emotionally, by providing her and her family with such a high level of compassion and reassurance.
“Being in the hospital can be so stressful, but I knew I was in the right place and had the right care,” Holl said.
Tung also pointed Holl towards an online community for other women with adult congenital heart defects, called “Zipper Sisters.” Holl shared how important to her healing it has been to be part of a community of women who share her same journey and understand her struggles.
“It can be a lonely experience knowing you were born with a 1 in 100 defect and growing up and knowing you were different from other children. It’s important for patients to know they’re not alone,” Tung said. “Groups such as the Adult Congenital Heart Association do a great job at educating and supporting research for congenital heart defects.”
Now, a year later Holl has much more energy and an abundance of gratitude for a healthy heart that’s beating as it should.
“I like to joke with my husband that last year I got a broken heart for Valentine’s Day, so this year should be much better,” she said.
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