‘It’s really a brand new field’: Treating adult hearts with childhood conditions

Successful treatment of congenital heart disease of children means more adults are in need of care.
Successful treatment of congenital heart disease of children means more adults are in need of care.
Published: Sep. 4, 2023 at 5:32 PM CDT
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NASHVILLE, Tenn. (WSMV) - Erin Matchett has a happy, healthy three-year-old son. But because she was born with a congenital heart defect (CHD), it’s a dream she didn’t know would ever be fulfilled.

“My pediatric cardiologist, he was very conservative and definitely told me early that probably was not going to happen for me,” Matchett said.

Matchett was born with tricuspid atresia. It’s a condition where one chamber of the heart doesn’t form properly. After several surgeries before she turned two, and another while she was in her teens, her heart now utilizes just three chambers, not the usual four, to pump blood through her body. She says doctors didn’t know then how pregnancy might impact her heart. However, as she grew up and recommendations changed, she asked again.

“In a matter of 10 years, that answer changed from no to yes.”

Her story is just one of the reasons Dr. Angela Weingarten has helped spearhead a joint program between Monroe Carell Children’s Hospital and Vanderbilt University Medical Center to treat adult congenital heart disease patients.

“The first board exam for adult CHD was offered in 2015. It’s really a brand-new field,” Dr. Weingarten said.

Dr. Weingarten says the successful treatment of CHD took off in the 1970s and 1980s. It means more children with CHD successfully grew up and now need adult care.

“I think having someone who understands adult medicine, who understands coronary disease, the things that come when people grow up and also understand the congenital heart disease pieces is really imperative.”

Dr. Weingarten says it’s estimated only about 10% of adults with congenital heart disease are getting the care that they need.

“The arrhythmias are different in adults than they are in kids. The other comorbidities, smoking, diabetes, all of the things that affect adults now come into play with these people who’ve had lots of surgery on your heart as babies.”

Dr. Weingarten says the joint program also helps young adult patients understand how they may need to be monitored in the future and how their heart condition may impact other areas of their lives, like pregnancy.

“It’s serious business when these (CHD) babies are born. You have to focus on getting them through and surviving. And so once that part is over, it’s time to… start thinking about what’s important to them. What do they want? What are their goals? For their life?”

Matchett is thankful her goal to become a mother was possible. She continues to have regular check-ups and monitoring to see how her body is dealing with the CHD.

“Probably the one question I get asked more often than not is, ‘Oh, so you’re fixed?’ I’m not fixed. I’m not going to be fixed. Like, does my heart function? Yes. But there’s nothing to change that it was underdeveloped. You know, so there’s no, like, fixing. The functionality of the way our heart works will affect the liver, lungs, kidney, and brain.”

She says while growing up in the medical field is sometimes hard, she’s also thankful for the impact her life may have on another person like her.

“It’s weird to think that you’re someone else’s hero. I might get emotional now. But it really is, because these kids are looking to us to see, ‘Well they did that. Well, they did that.’ So I’m hopeful in that, but yeah, it’s a little scary at the same time.”

Dr. Weingarten says physicians with the joint program at Vanderbilt also connect with similar programs nationwide so that they can work together to provide the best advice for these patients