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Every Day

August - December 2007 Issue

Adults With Congenital Heart Disease Need Life-Long Care

One in 100 babies in the United States is born with congenital heart disease (CHD) — a problem that occurs in the heart as it develops in the womb.

“The majority of these patients — 80 to 90 percent — are diagnosed as children,” said Medical College of Wisconsin cardiologist Michael Earing, MD. “Prior to the development of surgical interventions to treat these children, only 20 percent would survive to adulthood.

“Today, about 90 percent of children who have surgery for CHD survive to adulthood. In the United States, about 1 million adults with CHD are alive today, and about 16,000 of them live in Wisconsin.”

With more people with congenital heart disease surviving to adulthood, the need for better care has grown tremendously, requiring more heart specialists skilled in the treatment of adults with heart diseases.

Dr. Earing and Medical College of Wisconsin cardiologist Peter Bartz, MD, run the Adult Congenital Heart Disease Program, a joint program of Children’s Hospital of Wisconsin and Froedtert & the Medical College of Wisconsin — the only adult congenital heart disease program in Wisconsin. Patients receive comprehensive care, from diagnosis to interventional and surgical procedures and follow-up care.

“In the past, children born with heart disease had a short life span,” said Medical College of Wisconsin interventional cardiologist Michael Cinquegrani, MD, FACC, FSCAI. “As surgical techniques improved, they now survive into adulthood. But they still have underlying congenital heart disease.”

As an interventional cardiologist, Dr. Cinquegrani performs catheter-based procedures to treat heart disease, including closure of atrial septal defects (ASD) and patent foramen ovales (PFO), congenital defects that result in a hole in the heart.

“Congenital heart disease is different from heart disease that develops later in life,” Dr. Cinquegrani said “The physiology of congenital heart disease is more complex, and adults have a variety of complications. Some cases are very complicated.”

Drs. Earing and Bartz are specially trained to meet the specialized needs of adults with congenital heart disease, with training in pediatric and adult cardiology. In the last 10 years, only 31 physicians in the country have been formally trained in this specialty.

“Adults with congenital heart disease carry a lifelong burden,” Dr. Cinquegrani said. “Many live with physical limitations, are less tolerant of certain physical stresses and are more susceptible to certain diseases. They also develop the heart diseases that are common in adults (e.g., high blood pressure, coronary artery disease and heart failure) as well as diabetes.

“This is a growing population,” Dr. Earing said. “Though many adults with CHD may feel well, they are at risk for later complications and need regular follow-up care for life. Many have a poor understanding of their disease.”

“Most cardiologists who provide adult care have never seen, diagnosed or managed the unique problems of congenital heart disease,” Dr. Cinquegrani said. “They’re not used to dealing with congenital disorders.”

“The strains of adult life can cause problems for people who had heart surgery as children,” Dr. Earing said. “Arrhythmias (an irregular heart rhythm), heart failure and valve problems are among the problems they face.” These problems, in turn, can lead to other problems with the lungs, kidneys and liver as well as with pregnancy. “Many adults with CHD also have a low tolerance for other diseases.”

“Adult congenital heart disease is a rapidly growing part of medicine,” Dr. Cinquegrani said. “Drs. Earing and Bartz bridge the gap between pediatric and adult cardiologists. They know what to watch for going forward. They bring together specialists from both pediatric and adult cardiology to treat specific heart problems, such as fixing a valve, performing angioplasty for a narrowed artery or revising a surgical procedure done in childhood. Our heart and vascular specialists are partners with the program.”

The Adult Congenital Heart Disease Program is also involved in many national research projects to continue improving the care for this and future generations of adults with congenital heart disease.

Types of Congenital Heart Disease

The major types of congenital heart disease are:
  • Detour defects (“holes”) inside or outside the heart that cause blood to take an abnormal route
  • Obstructive defects that impede blood flow within the heart or the great vessels near it
  • Cyanotic defects that occur when blood pumped from the heart has a reduced level of oxygen (cyanosis)
  • Other developmental defects, such as being born with only one ventricle

 

 

Source: Every Day

Date: Aug - Dec 2007 Issue

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