Study Findings on Congenital Heart Disease

Severe cases of congenital heart disease are on the rise for North American adults. Researchers say this means that a growing number of infants born with congenital heart disease are living to be adults. Dr. Ariane Marelli says, "This is a real success story." Dr. Ariane Marelli is the head author on the study for congenital heart disease and she is also director of the McGill Adult Unit for Congenital Heart Disease Excellence at McGill University in Montreal, Canada.

The study Dr. Marelli was responsible for showed that severe congenital heart disease had risen among adults by 85 percent from 1985 to 2000. The study used analyzed databases in Quebec where access to health care is universal. The increase of congenital heart disease among children for the same time period was 22 percent. The study was published on Monday, January 8, 2007, in the Journal of the American Heart Association.

Congenital heart disease defects happens before birth and and is a structural problem that are related to the abnormal formation of the heart. Congenital heart defects also can affect the major blood vessels near the heart as well. Marelli stated that the increase in survival rates for infants born with the congenital heart defects were the most likely reason for the increase in adults with severe CHD but more research was needed to prove the link between the two. "There are many possible reasons for the increase but we think the most likely reasons are that advances in care of pediatric heart patients have allowed these infants to survive into adulthood," Dr. Marelli stated.

Dr. Marelli stated that infants who were born in the 1960s and the 1970s with congenital heart defects were less likely to survive than they are now. "To our knowledge, this is the first study to measure the changing number of patients in a North American population during a period of major progress in the management of CHD," said Marelli. Dr. Marelli continued to state, "This is the largest population study of CHD to have been performed in North America. We have no reason to believe that the predominantly Caucasian population of Quebec and Canada is different from the United States."

When the study findings were inferred in Quebec to the United States population, researchers estimate that nearly 1.8 million Americans had congenital heart disease in 2000, with 900,000 adults suffering from the disease and 900,000 children and infants. The study shows that in the United States this equals one out of every 250 adults have congenital heart disease, and one out of 85 children have the disease.

"For comparison purposes, cystic fibrosis occurs in one of 4,500 live births, so there are 45 times more children with CHD than children with cystic fibrosis and most of these children are now becoming adults,"Dr. Ariane Marelli said.

"The increasing prevalence of CHD means these children will live longer and acquire other forms of heart disease," Dr. Marelli responded.

Congenital heart disease is not considered one single disease, but it refers to many different structural defects in the heart. Congenital means that it is present at birth, but not necessarily inherited. Other terms used to describe congenital heart disease are cyanotic heart disease, heart defects, or congenital cardiovascular malformations.

Congenital heart disease defects are the leading cause of death from birth defects in the first year of an infant's life. From studies in the United States from 1992 through 2002, there has been a 25 percent decrease in deaths due to congenital heart disease. Over the past 50 years, medical research has made dramatic advancements in the treatment and correction of congenital heart defects.

A common myth among those who are born with congenital heart disease is that once the defect has been corrected, they feel as though they no longer need to receive medical treatment for their heart ever again. This is not true. Because of the initial heart defect, the person's heart is now vulnerable to additional complications that can lead to heart failure in the future. In order for individuals born with congenital heart defects to live long and productive lives, and to increase their survival rate, they need to see a cardiologist who specializes in CHD on a regular basis for the rest of their lives.