Thematic area 4: Congenital Heart Diseases in Adults and Children

Congenital heart defects (CHDs) are problems with the structure of the heart. “Congenital” means that that the problems are present at birth. These defects happen when a baby’s heart doesn’t develop normally during pregnancy. Congenital heart defects are the most common type of birth defect. Congenital heart defects can change the way the heart pumps blood. They may make blood flow too slowly, go the wrong way, or block it completely. There are many types of congenital heart defects. They can happen in one or more parts of the heart. The most common types are:

• Septal defects (“hole in the heart”) – openings in the wall between the left and right sides of the heart
• Heart valve defects – problems with the valves that control the flow of blood through the heart
• Defects in the large blood vessels that carry blood in and out of the heart
• Congenital heart defects can range from very mild problems that never need treatment to life-threatening problems at birth. The most serious congenital heart defects are called critical congenital heart disease. Babies with these defects usually need surgery in the first year of life. But the symptoms of milder heart defects may not show up until childhood or adulthood.

The cause of congenital heart disease may be genetic, environmental, or a combination of both. There are many different diseases included, some more common and some very rare. Because of the large size of the complete field ànd because large differences / different needs in the care for (young) children and adults, there are two thematic area leaders in the ERN. One for the pediatric part (Prof. dr. N.A. Blom) and one for the adults with congenital heart diseases (GUCH): Dr. A.E. van den Bosch. In both areas there is special attention for the so-called ‘transition-programme’ for adolescents (from the pediatric age group to the adult age group).