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Congenital heart disease grows up

Cindy Martin, M.D., and James Moller, M.D., see patients together at the University's new Adult Congenital and Cardiovascular Genetics Clinic. (Photo: Scott Streble)

A new University program fills a critical gap for young adults who find themselves too old for pediatric cardiac care

For nearly all of her life, 22-year-old Shannon Beestman has received care at the University of Minnesota to treat her congenital heart defect. Having been under the care of a pediatric cardiac team for more than two decades, Beestman had concerns about transitioning to a cardiologist trained primarily in adult heart care.

But last year, thanks in part to the University’s new Adult Congenital and Cardiovascular Genetics Clinic, that transition became a little easier.

The new clinic, which opened in February 2009, brings together pediatric cardiologists and adult cardiologists—literally. During at least the first several visits (and often indefinitely), patients receiving care through the clinic will meet with both experts at the same time.

“We combine the specialties in one clinical visit to provide the patient with the best of both [practices],” explains Cindy Martin, M.D., an adult cardiologist who codirects the clinic with pediatric cardiologist James Moller, M.D. “By integrating the specialties of pediatric and adult cardiac care, our program has the ability to provide everything patients need, from knowing about what happened during their first congenital heart surgeries as infants to providing care for whatever advanced adult cardiac disease may occur up until their 90s or 100s.”

Martin says it’s not uncommon for patients to seek follow-up care from their pediatricians until age 18, at which point they go off to college or get married and subsequently get lost in follow-up.

That lack of care is concerning, she adds, because most patients who have congenital heart disease carry a higher risk of developing heart-related complications such as high blood pressure or even heart failure in the future.

Meeting a growing need

Advances in pediatric heart care—many of which were developed at the University—have created this unique group of patients. Five decades ago, some children born with congenital heart defects tended not to live long enough to need heart care as adults.

But in 2005, for the first time ever, the number of adults who had congenital heart disease surpassed the number of children who had it.

“We have 50-year survivors,” Moller says. “For several conditions, we have seen survival rates similar to that of the general population.”

Continuous care

The continuity of care offered at the new Adult Congenital and Cardiovascular Genetics Clinic meets a critical need for the thousands of people who are living with congenital heart disease long-term.

In addition to pediatric and adult cardiologists, the clinic staff also includes a clinical coordinator, a congenital heart echocardiographer, and a genetic counselor. These experts provide pre-pregnancy counseling and care coordination with maternal-fetal medicine physicians in case a patient’s pregnancy becomes high risk.

When needed, the team also includes pediatric cardiothoracic surgeons. Roosevelt Bryant III, M.D., and James St. Louis, M.D., provide consultations when their colleagues think that surgery may be necessary.

“It ensures [a] degree of continuity for the patient—especially if that surgeon has performed many of that individual’s operations,” explains Bryant.

For Beestman, this collaborative group has set her mind at ease.

“Because of this clinic, I will never, ever be made to feel that pediatric cardiology is kicking me out the door and handing me off to a complete stranger,” she says. “Seeing my pediatric cardiologist working in collaboration with my adult cardiologist is incredibly comforting and reassuring.”

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