Adult Congenital Heart Disease

About one in every 100 babies is born with some type of heart defect, making congenital heart disease the most common birth defect. But thanks to many advances in medical care, 90 percent of these children now survive to adulthood. 

Adults with congenital heart disease are a new and growing segment of the patient population, and a program of University of Louisville Physicians and Norton Children’s Hospital cares for these patients with a statewide network of specialized services. We are the only adult congenital heart disease program in the state of Kentucky.

There are between 2-3 million adults and children living in the United States with congenital heart disease, and there are now at least as many adults living with the condition as children, according to the Adult Congenital Heart Association. Exact estimates of how many adults have the condition are difficult because there is no system in the United States to track congenital heart disease beyond early childhood, but hundreds of adults in Kentucky are living with congenital heart disease. 

Although most adults with congenital heart disease are generally healthy, they are often at risk for long-term medical issues. Even when the defect was successfully repaired in childhood, they are never truly cured, so most need ongoing monitoring and care. The unique medical complexities in caring for adults with congenital heart disease has recently been recognized by the American Board of Internal Medicine, which formally approved the medical subspecialty of adult congenital heart disease, and now requires a board examination. 

But many adults have found getting the care they need for congenital heart disease difficult, as there have historically been few doctors who understand the condition in adults. Unfortunately, that is because many children in the past did not survive.  Without a place to go for specialized care, many of these adult patients are not treated for their condition after they leave pediatric care.

The University of Louisville Physicians and Norton Children’s Hospital program fills that gap. With a team of dedicated specialists including Dr. Craig Alexander, Kentucky’s only fellowship-trained cardiologist specializing in adult congenital heart disease, the program is the resource in the state of Kentucky for adult congenital heart care, helping patients live longer, healthier lives.

Read Hannah's story: Once only for children, congenital heart disease now affects more adults.

A congenital heart defect is a problem with the heart’s structure at birth. Common defects include holes in the heart and misplaced, malformed and/or missing valves, vessels and heart chambers. Heart defects often are a combination of issues. More than half of children born with a congenital heart defect will require one or more open-heart surgeries before the age of 2.

While a person may have their heart defect successfully repaired as a child, congenital heart disease is often a lifelong problem. Adults with the condition may need additional surgeries or medication. 

Although most adults with congenital heart disease are generally healthy, they are often at risk for long-term medical problems, such as difficulty with exercise and disturbances in heart rhythm.  They can also be at high risk for sudden cardiac arrest, stroke and premature death, and their rates of emergency room visits and hospitalizations are three or four times higher than the general population, according to the Adult Congenital Heart Association. Many women with congenital heart disease may find that problems arise during pregnancy. All women with congenital heart disease should check with a specialist in the condition before becoming pregnant. With proper care, most women with adult congenital heart disease can have a baby.

All adults born with congenital heart disease should be seen regularly by a doctor who specializes in the condition. It is estimated that fewer that 10 percent of adults with the condition in the United States are receiving that care, largely due to the lack of physicians who specialize in adult congenital heart disease. 

 

The American College of Cardiology and the American Heart Association have developed guidelines for caring for adult patients with congenital heart disease. Among the guidelines are that these patients be seen at specialized programs where doctors have the most current information on the condition. UofL Physicians is the only program of this kind in Kentucky.

We are fully equipped for the most comprehensive care, with clinical offices at UofL Physicians and testing and treatment options at Norton Children’s Hospital.

This includes advanced diagnostic testing and cardiac imaging, interventional catheterizations, including advanced device implantation and complex arrhythmia therapies, as well as complex surgical procedures. Treatment plans include advanced heart failure, ventricular assist devices and transplantation therapies.

In addition to Louisville, pediatric cardiologists with UofL Physicians travel to eight rotating sites across the state to see patients who cannot easily make the trip. 

If you have been told you had a congenital heart defect as a child, you should have your heart checked by a specialist in adult congenital heart disease, even if you are not currently experiencing any problems. Congenital heart disease is very different than other adult heart disease. Our doctors can develop a formalized transition plan to adult care for congenital heart patients starting at age 15, and are actively involved in national research projects to study optimal treatment strategies. 

Physicians across the state may refer their patients who are in need of specialized and ongoing care for adult congenital heart disease, and the UofL Physicians team will stay in communication, enabling the patient’s regular physician to remain part of their care. 

 

Physicians in this practice may not see patients at all locations listed below. For details, please call the appointment line for the location you are interested in visiting.

The University of Louisville Physicians adult congenital heart program is primarily located at Norton Children’s Hospital, with clinical offices on the University of Louisville Health Sciences Campus. In addition to Louisville, pediatric cardiologists with UofL Physicians travel to eight rotating sites across the state. These locations include Paducah, Murray, Madisonville, Owensboro, Bowling Green, Elizabethtown, Campbellsville and Ashland. Click here for more details.

Some of our adult congenital heart specialists also have privileges at other hospitals, including University of Louisville Hospital, Norton Hospital and Baptist Healthcare.

To make an appointment or refer a patient to the UofL Physicians adult congenital heart program, call 502-585-4802.

 

Offices and Clinics

  • UofL Physicians Adult Congenital Heart Program
    601 S. Floyd St.
    Suite 602
    Louisville, Kentucky 40202
    502-585-4802
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Hospital Affiliations

  • University of Louisville Hospital
  • Norton Hospitals
  • Norton Children’s Hospital
  • Baptist Hospital East

The University of Louisville Physicians adult congenital heart disease program is co-directed by Dr. Craig Alexander and Dr. Walter Sobczyk.  Dr. Alexander is the only doctor in Kentucky who has been fellowship-trained in adult congenital heart disease, and he will be among the first group in the nation seeking board-certification in ACHD. 

Dr. Sobczyk has been treating ACHD patients for over 25 years.

They are joined by a team of other specialists in adult congenital heart disease, including heart surgeon Dr. Frank Pigula, who comes to the University of Louisville and Norton Children’s Hospital from Harvard Medical School in Boston.  Dr. Pigula is a member of the Society of Thoracic Surgeons’ Workforce on Surgical Treatment of Adults with Congenital Heart Disease, which identifies and assesses issues of unique concern to surgeons who treat adults with congenital heart disease. 

Our team also includes:

 

Next Steps

For more information or to make an appointment,
call 502-588-6000