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Prokop: Adult care imperative for congenital heart disease

Gail Prokop

Gail Prokop

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Updated: January 3, 2013 6:24AM



Congenital heart disease refers to diseases of the heart that are present at birth. These defects typically occur while the heart is forming and involve abnormal development of the structures of the heart.

While there are more than 30 different types of congenital heart disease, the most common defects involve holes in the heart, missing or misaligned blood vessels (arteries and veins) that transport blood between the heart and lungs, missing or malformed heart valves and problems with the actual pumping chambers of the heart. Frequently, an individual will have multiple defects at the same time.

Congenital heart defects can range anywhere from minor defects that correct themselves over time or don’t require treatment to complex and severe abnormalities that are fatal without expert treatment and surgical repair.

In the past, patients with moderate and complex congenital heart defects did not live normal lives. As children, these patients had severe physical restrictions, and many did not survive into adolescence, even with aggressive treatment.

Advances in medical procedures and technology have drastically changed the lives of those with congenital heart disease. Since the 1980s, the mortality rate for moderate and complex heart defects has dropped dramatically. Patients with congenital heart disease (CHD) are living longer, stronger and healthier lives.

As a result of these medical advances, there are more adults living with congenital heart disease today than children. While this is great news, transitioning out of adolescence is not the end of the CHD road.

“Adults with CHD continue to need specialized heart care throughout their lives,” said Joel Hardin, medical director of the adult CHD program at Christ Medical Center and Advocate Children’s Hospital in Oak Lawn. “As adults live longer lives, they can develop additional complications related to their original heart defects.”

Some long-term problems that adults with CHD often develop include heart rhythm problems, decreased exercise intolerance and fatigue. Adults with complex defects are at higher risk of stroke, heart failure and even sudden cardiac death.

Unfortunately, many of these complications develop slowly and without symptoms so that by the time a person has symptoms, the heart is severely damaged. Once the heart damage becomes severe, it may not be reversible. When detected and treated early on, most complications can be effectively treated and heart function preserved.

Because of the serious complications that can develop as adults age with CHD, patients need to continue to seek care from medical providers who are knowledgeable about not only structural heart defects but also the long-term complications of these defects and the potential problems that can result.

Cardiologists with expertise in adult CHD work in partnership with primary care providers and other experts. Adult CHD patients in the Chicago area have access to entire programs dedicated to their care, typically a comprehensive team approach to managing CHD.

In addition to CHD physicians, these specialists include technicians specially trained in performing CHD echocardiograms and other diagnostic testing, social services and career counseling. Nurse practitioners help patients understand their disease and assist them in navigating through the health care system.

If you or someone you care about has been diagnosed with a heart defect, experts urge you to seek at least an initial evaluation at an adult CHD center to ensure that you are maximizing your heart health.

Anyone who had heart surgery as a child should be monitored for specific complications related to their defect and surgery.

Those with moderate or complex heart disease should be seen regularly by an adult CHD specialist, while people with mild CHD may only need to be seen every few years after an initial evaluation.

Gail Prokop has been a nurse for more than 20 years.

She is the nurse practitioner with the newly formed adult CHD program at Christ Medical Center in Oak Lawn.



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