Many people think heart problems are part of aging, a concern only for middle-aged and elderly people. Surprisingly, there are approximately 540,000 Americans alive today who were born with heart defects. Congenital heart defects (CHDs) account for about one in 100 births. About 25,000 to 30,000 children are born each year with a heart defect, according to the American Heart Association.

There are at least 35 different types of congenital heart defects, some requiring little or no treatment. Some heart defects are "innocent murmurs," small holes in the heart, which often "go away" after time and only require an annual visit to the cardiologist. Unfortunately, though, there are a group of children with more severe CHDs. Many of these children have a combination of heart defects which are fatal without treatment. You may have heard of some of these kinds of heart defects: Tetralogy of Fallot, Hypoplastic Left Heart Syndrome (remember Baby Faye?), Pulmonary Atresia, Transposition of the Great Vessels, just to name a few.

There are many other problems in the heart which can occur, such as narrowing of the aorta, valve problems (there are four valves in the heart) or "holes in the heart" which are really holes in the septum dividing the two atria or the two ventricles. Combinations of these heart defects can render a baby blue due to lack of oxygen. These "cyanotic" babies have their heart defects identified early. There are also acyanotic babies who might have many problems, but who have mixing of the blood due to holes in the heart. Sometimes these babies' heart defects are not diagnosed until it is too late.

Children with severe CHD often need a number of staged procedures over the course of months or years. Sadly, some of these children survive one procedure only to die during a second or third open-heart surgery. Incredible advances have been made in medical technology and more children are surviving than ever before. There are still some babies who die within hours of birth with heart defects so complex, that they are not viable candidates for surgery.

Clearly, there is still a need for research in the area of CHDs. Why is a baby born with a heart defect? Scientific research has given us some answers, but not many. Some diseases such as German measles and viral infections are known to cause CHDs. On rare occasions CHDs are inherited. In most cases parents have "done everything right" during the pregnancy and wonder what more could have been done to prevent their child's heart defect.

Unfortunately, most of the time, doctors are unable to tell parents what caused the CHD. Doctors need more money for research in order to give parents the answers to their questions. Having a baby with CHD affects every aspect of a family's life. Doctor visits are often frequent. Many children with heart defects have other problems, too. It is not unusual for children with heart defects to require feeding tubes, oxygen at home and even sleep apnea monitors. Sometimes babies with severe CHD's require help from GI doctors and nutritionists (for feeding problems), speech language pathologists, physical therapists and/or occupational therapists.

What is sorely lacking in the United States regarding congenital heart defects? Support . There is little to no support for parents of a child diagnosed with a CHD. Although parents are thrown into an often totally unknown medical world, they must find a way to get sorely needed information on their own. They sometimes are required to make difficult decisions without the benefit of a medical degree, and they have to do it during the most traumatic time in a parent's life: when they have to make a life-and-death decision about their baby's care.

Luckily for parents, the Internet has provided parents with this badly needed support and comfort. The American Heart Association website supplies information about congenital heart disease.

CongenitalHeartDefects.com is another great site with lots of information and support.

The future could not be brighter for children born with congenital heart defects today. Today more and more children are being saved. With more research there may come a time when children do not have to die just because they are born with a heart defect.

Return to Writer's Corner

Return to Home Page