Of the 2 million American adults and children with congenital heart defects, less than
10 percent of adults get the care they need.
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Children born with even the most complex congenital heart defects are surviving far later into adulthood than ever before, never outgrowing their disease. As they age, few receive the care they need.
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Now, Florida Hospital for Children, soon to be AdventHealth for Children, is launching the Adult Congenital Heart Disease Clinic -- the first of its kind in metro Orlando -- to provide these patients specialized care by a clinical team trained in both congenital heart defects and adult cardiology.
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More than 2 million American adults and children are believed to have a congenital heart defect, and over 10,000 of them are estimated to be in Central Florida. Only about 10 percent of adults get the recommended care they need, according to the Adult Congenital Heart Association.
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"It's important that children with congenital heart defects continue to be cared for by a specialist as they become adults. Unfortunately, there often isn't a specialist nearby who can provide this care for these patients," said Dr. Rajan Wadhawan, senior executive officer of Florida Hospital for Children. "One of the greatest medical needs in Central Florida is for this specialized care, and it's important that we expand access to these services."
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In 1940, the survival rate of patients with congenital heart disease was 20 percent. Today, more than 95 percent of the people treated for congenital heart disease live to be adults, according the Centers for Disease Control and Prevention.
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Dr. David Briston, a pediatric and adult congenital cardiologist at Florida Hospital for Children, said people born with congenital heart disease can have other medical issues as adults such as at-risk pregnancies, heart failure and an abnormal heart rhythm. Care provided by a specialist in the disease allows these patients to receive the care they need in a timely manner, often making changes in their heart reversible.
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"Transition of care is not a single event -- it's process which takes years. Some children are ready to be seen by an adult cardiologist at the age of 14, while others are still not ready at 21," said Briston. "As these children grow up, our program provides them with 'health maintenance'. In the same way you'd go to your primary care doctor every year to get an annual check-up, we need to do the same with congenital heart patients so they stay well for years to come."
