The Big Transition

Birth defects of the heart

heart vascular health line art

Congenital heart disease is another name for birth defects of the heart.  The most common congenital defect is a hole between the chambers of the heart, but may also include malformations of the valves, aorta, and general size and shape of the heart.  In the old days, children born with heart defects didn’t live very long.  But today, surgeons are able to correct many of these defects early in the children’s’ lives.  As a result, thousands of children with congenital heart defects are now able to grow into healthy, fully functioning adults.  However, childhood surgery is not always a permanent solution, so these patients need continual monitoring throughout their lives.  A perennial issue among cardiologists who treat these patients is when they should be transitioned from pediatric to adult care.  The problem is made more difficult because patients with congenital heart disease often develop strong relationships with their pediatric provider.

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Richard Krasuski, MD

“Our specialty has been struggling with the mode of transition from pediatric to adult care for some time,” says Richard Krasuski, MD, medical director of the Cleveland Clinic Center for Adult Congenital Heart Disease .  “Both the timing of transition and the people involved are difficult to coordinate. Typically, adult cardiologists, even those with specific training in congenital heart disease, will not feel comfortable with patients under the age of 18.  Pediatricians are usually more comfortable and familiar with the patient-parent-physician dynamics in these cases.  Ideally, during early adulthood the patient will transition to an adult cardiologist who has experience and an interest in adult congenital heart disease.  The complexity of the heart disease needs to be matched to the expertise of the potential physician.”

The Center for Adult Congenital Heart Disease is a collaboration among cardiologists, surgeons and others who specialize in the issues faced by this particular patient group.  But this kind of coordinated care is rare, nationwide.  “The care of most patients with congenital heart disease is still in the hands of general cardiologists and even primary care physicians,” says Dr. Krasuski.

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You can read more common questions and answers about this topic at our adult congenital heart disease web chat transcripts.

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