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    There are more than three-quarters of a million adults in the United States living with a congenital heart defect. The majority need ongoing, specialized care. CNN Medical Correspondent Judy Fortin found out more about the condition from Dr. Wendy Book, director of the Adult Congenital Cardiac Program at Emory University in Atlanta. Fortin: How common are congenital heart defects among infants born today? Book: Congenital heart defects are among the most common birth defects in the United States. They affect about one in every 120 babies that are born. There are no signs that is changing. We expect the incidence of these defects to be the same. (Watch how congenital heart defects can be treated. Fortin: How do the defects vary? Book: At least 35 defects have been identified. Some of the milder defects can be cured with surgery in childhood such as a small hole between two chambers of the heart. Other mild defects can be followed life-long and may require surgery late in adulthood. On the severe end of the spectrum, you have defects that cause death right after birth or in infancy. Fortin: How have advances in medicine affected survival? Book: Most children 50 years ago did not survive through childhood when they were born with some of the more severe, complicated defects. Even some of the defects we consider fairly routine to repair today, 50 years ago were fatal. Fortin: When did things start to change? Book: The first surgeries were done in the '40's and '50's, but congenital heart surgery really took off in the '60's. That made a big difference in survival. Today, we now expect 90 percent of kids born with congenital heart defects to survive to adulthood. Fortin: How are the defects diagnosed? Book: Most of them can be seen now with an echocardiogram, a special ultrasound done in utero, and some can be missed. Some are diagnosed several weeks after birth in a pediatrician's office when a heart murmur is heard. Others are diagnosed late in life. Fortin: Why is it important to continue treatment through adulthood? Book: These pioneers who were at the forefront of heart surgery weren't aware at that time, the doctors weren't aware, their parents weren't aware and the kids weren't aware that they would have ongoing problems that need follow-up in adulthood. Fortin: Do some of the patients need to see specialists? Book: The patients with moderate or complex heart defects do need specialty care in a center that understands not only the heart defect they were born with but the surgeries they've had and how that will influence the long-term problems. Fortin: How many adults actually seek care? Book: There are roughly 800,000 adults in the United States with congenital heart defects. It's not clear how many are in care, but probably less than half are getting the care they need at this time. Many of them believe that their surgery was curative and they don't need any follow-up. They don't understand that they may need another surgery or medication and have complications as time goes on that require attention. |
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Mitch Farmer was born with a congenital heart defect but didn't realize the extent of his medical problems until he was 30.
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