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Adults find treatment for congenital heart disease at Children’s Hospital

About 16,000 adults in Colorado aren't getting the care they need to treat congenital heart disease. Many don't know that care can be found at Children's Hospital.

AURORA, Colo. — Like one percent of babies born in the United States, Chis Dini was diagnosed with congenital heart disease (CHD) shortly after birth.

“It was really stressful,” he told 9NEWS. “I think it was really stressful for my mom and my dad not knowing what the future held for me.”

 CHD is a problem with the heart. In Dini’s case, his arteries were switched.

“There was a team of surgeons and doctors that assembled around me at 6 months old when I had surgery and what they did for me…they let me live a normal life.”

Thanks to advancements in diagnoses and care, more children with CHD end up living healthy lives as adults. Dini is now a firefighter with the Fort Collins Fire Department, a career doctors once told him he may not be able to fulfill.

Many adults do not realize that surgeries aren’t a cure and that they need to continue treatment. In Dini’s case, it’s with Children’s Hospital Colorado.

Dr. Joseph Kay is the program director for the Adult Congenital Heart Disease Program.

“Recently, Children’s has developed a policy where we shouldn’t have an age limit because the expertise for many procedures here,” Dr. Kay said.

There are 16,000 adults in Colorado who are not getting the proper treatment; whether that be because they don’t know they need it, or they don’t know there are specialists.

“For the last two decades, more than 93% of the kids are surviving so we’re having a sudden increase in adult survivors,” Kay said.

Which means as time goes on, there may be more adults who do not realize how important it is to get checked at least once a year to make sure their hearts are still working okay.

“My message is programs exist,” Dr. Kay said. “There is a specialty of physicians and cardiologists to care for adults who have survived congenital heart disease, and we can maintain health for much, much longer if we see them regularly.”

>Click/tap here for more information on the Adult Congenital Heart Disease Program and Children’s Hospital Colorado.

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