February is American Heart Month, a time to remember the importance of good heart health. But this year, doctors are shining a light on those who are all too often forgotten.

The forgotten 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 hoping 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 concerned her doctors. 

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

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

"The best we can estimate is only about 30,000 to 40,000 of them out of a million are in specialized care," Dr. Curt Daniels of Nationwide Children's Hospital said. 

That means 95 percent of those who get routine cardiac care as kids, stop getting it after they become adults.  But doctors want to change that. 

In one of the first programs of its kids, teams at Nationwide Children's Hospital 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 preventative 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 an arrhythmia that could be life-threatening," Dr. Daniels said. 

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," Caitlyn said. 

by staying in touch, her care can continue without missing a beat.