Medical advances are allowing babies who used to die from congenital conditions early in life to live longer. That’s created a new problem as the doctors who help children born with issues like a heart defect or cystic fibrosis don’t always know how to help them once they become adults.
Twenty-two month old John Ten Paas of Pleasant Hill, is a good example. Ten Paas was born with what’s known as a hypo-plastic left artery — basically, an underdeveloped heart. During a check up at the University of Iowa Hospitals, his father Kyle says the condition would have been hopeless not that long ago.
“Twenty-five years ago we wouldn’t have John today, there were not options, there weren’t three surgeries,” Ten Paas says. “So medicine has come a long way, a lot of research, a lot of great things. Doctors say no one with the child’s particular condition has yet reached age 40.
Dr. Curt Daniels of the Ohio State University Medical Center specializes in congenital heart defects, but says many adults don’t seek the follow up care they need after those early surgeries because there aren’t enough doctors trained to care for them. “Neither the pediatric cardiologists or the adult cardiologists are trained in this field where now congenital heart disease patients are reaching adulthood at a rate of about 20-thousand new patients a year,” Daniels says.
He says the outcomes are not good for patients who don’t get proper follow-up care. Dr. Ricardo Flores is a pediatric lung specialist at Blank Children’s Hospital in Des Moines. He’s also treating a growing number of adult patients. “Their adult needs are really for me as a pediatrician foreign. I’m not comfortable with the world of pregnancies and high blood pressures,” Flores says.
Dr. Daniels is working to help address the problem by training more doctors and is an advisor to the Adult Congenital Heart Association. The University of Iowa is also reaching out to former adult congenital heart patients, urging them to seek a follow-up visit. Iowa Methodist Hospital in Des Moines is working to develop an adult Cystic Fibrosis center – one of about three-dozen in the country.
It’s expected to open this summer, alongside an existing children’s center.