Kids with congenital heart disease can grow up healthy within the newly accredited Adolescent and Adult Congenital Heart Disease (ACHD) Program at Cincinnati Children’s

Dan remembers his early days as a patient at Cincinnati Children’s. It was the 1950s. Iron lung machines lined the basement hallways. Open-heart surgeries were rare. The hospital occupied a few buildings in Avondale.

Times have changed.

Now, Dan has children—and a grandchild—of his own. Technology has advanced. Outcomes have improved. Cincinnati Children’s has grown. 

Of course, Dan isn’t the only person who’s witnessed these transformations. It’s just that he’s watched them from an unusual vantage point.

You see, when Dan walks the halls at Cincinnati Children’s nowadays, it isn’t just for the memories. It’s because, after all these years, he’s still a patient. 

Seeking the Best Care

Dan receives care through the Adolescent and Adult Congenital Heart Disease (ACHD) Program at Cincinnati Children’s. 

He was born with a defective heart valve. Back in those early days of his care, he was seen by Sam Kaplan, MD, the doctor who founded the medical center’s Division of Cardiology. As an 8-year-old, Dan underwent the first of many open-heart procedures.

Years later, when his doctors neared retirement, Dan transitioned to receiving care from cardiologists outside of Cincinnati Children’s. 

“For someone with a heart condition like mine, there’s nothing harder than having to change physicians. But I’ve always been very cognizant of who my caregivers are. It’s crucial that doctors understand all the differences between someone with life-long congenital heart disease and someone who has late-onset disease,” Dan says.

He grew comfortable with his new doctors, but a few years ago he received unexpected news: Cincinnati Children’s was launching a clinic specifically for adults with congenital heart disease (CHD). He was thrilled, and after consulting with his cardiologists he knew what he had to do.

“Returning to Cincinnati Children’s was one of the easiest decisions of my life,” he says. “Having caregivers whose expertise is adults with congenital heart disease is such a fantastic opportunity—not just for me, but for patients everywhere. Coming back was like coming home.”

A Hidden Threat to Health

Dan is receiving the specialized care he needs here at Cincinnati Children’s. That puts him in a lucky minority.

Of the more than one million adults in the United States who have CHD, fewer than 10 percent receive follow-up care from a cardiologist who is specially trained to care for them and their unique needs.

Even as people with CHD are living longer than ever, the vast majority are receiving suboptimal cardiac care—that is, if they’re receiving specialized cardiac care at all.

“We all like to be optimistic, and if we get a good report from our doctor, we kind of take it to mean that we’re good forever,” says Gary Webb, MD, the doctor who launched the ACHD program. “Unfortunately, for many people with congenital heart disease, that’s not necessarily true. They remain at risk for complications like arrhythmia, heart failure, infection, stroke and even premature death.”

The stakes are clear. Yet for many adults with CHD, one key question remains: Where should I go for care?

Accredited for Excellence

In 2016, the ACHD program at Cincinnati Children’s was awarded accreditation by the Adult Congenital Heart Association (ACHA). Only a handful of programs across the country have earned this designation. 

Accreditation from the ACHA means Cincinnati Children’s has assembled a team of specialists that range from adult congenital cardiologists and advanced practice nurses to electrophysiologists and heart failure specialists. The ACHA requires programs to offer outpatient care, cardiac intensive and inpatient care, pregnancy services, and exercise and cardiac rehabilitation.

This means Cincinnati Children’s can provide world-class care to adults with CHD—whether they were treated here as children or not.

“Up until recently, patients and their caregivers really had no idea where to go for specialized care,” says Andrew Redington, MD, executive co-director of the Heart Institute at Cincinnati Children’s. “The accreditation process is now providing patients and caregivers a validated destination to receive the highest quality care. Statistics show that this will lead to a reduction in mortality and an improvement in outcomes.”

To put it another way, Cincinnati Children’s isn’t only for children. We’re also improving the lives of adults.

A New Way Forward

Dr. Redington often speaks of “orphaned” CHD patients, meaning adults who no longer have a medical home.

Cincinnati Children’s is poised to become the new medical home for many such patients. But we’re also focused on preventing patients from becoming healthcare “orphans” in the first place.

“We’re prepared to take ownership of our patients as they reach adulthood,” says Gruschen Veldtman, FRCP, MBChB, who succeeded Dr. Webb as the ACHD program’s director following Dr. Webb’s retirement. “I believe this is the model that is needed more widely across the US, to capture these patients from within the pediatric institutions before they’re lost to care as adults.”

By continuing to care for children into adulthood, our team can prevent many of the complications that arise when CHD goes untreated, or is treated without a view to the patient’s full medical history.

“I believe that Cincinnati Children’s is going to show the way forward—how we can do things better than we’ve done them in the past,” says Dr. Veldtman.

Patients like Dan are looking forward to that future.

“No one offers better care than this hospital,” he says. “They’re the best in the world at what they do. Not a day goes by that I don’t think about the people who have cared for me here. I’m so grateful for what I’ve been given.”