February is American Heart Month, a time when we remember the importance of good heart health. But this year doctors are shining the light on those who are all too often forgotten. They are kids who are born with heart defects, who live to become adults. A staggering number of them are now living without proper care, but one program is out to change that.

Even though she's developed a very natural beat Caitlyn MacKay didn't start out that way. In fact, the very first beats of her heart were cause for concern for her doctors.

"After they did an echocardiogram, they realized that it was not just a murmur, but that she had an extensive cardiac defect," says Ailene MacKay, Caitlyn's mother.

Caitlyn underwent surgery just 90 days into her life, and has had consistent care since. In many ways, she's living proof of just how far we've come in caring for kids with heart problems. But once patients like Caitlyn become adults, that all changes.

"The best we can estimate is only about 30 to 40-thousand of them out of a million are in specialized care," says Curt Daniels, MD at Nationwide Children's Hospital.

That means 95% of those who got routine cardiac care as kids, stop getting it after they become adults. Doctor Curt Daniels and his team at Nationwide Children's Hospital are hoping to change that. In one of the first programs of its kind, teams are starting to work with patients at the age of 15 to transition them into adult care, pairing them with new doctors, sorting out insurance issues and underscoring the need to continue preventive care.

"Many times when we do see adults with congenital heart disease come back to care it is during a crisis situation, where they come back in with heart failure, they come back with arrhythmia that could be life threatening," says Dr. Daniels.

And Dr. Daniels, who is also with the Ohio State University, says that is why continuing care is so important. As Caitlyn enters college to study music, she says it helps knowing there are doctors nearby who know her needs.

"It just helps that they're around, so if I ever need them I can call them or stop in and say this is what's going on and see if they can help," says Caitlyn.

And by staying in touch, Caitlyn's care can continue, without missing a beat. Nationwide Children's Hospital is also participating in a first ever multi-center study of adults with congenital heart disease. The 2-year study will look at why adults become lost to care and how to best reach out to these patients.

*National Institutes of Health Approves First Ever Research Study for the Adult Congenital Heart
Association, Adult Congenital Heart Association, www.achaheart

Ohio State University Medical Center