The Adult with Congenital Heart Disease: Frequently Asked Questions

What exactly is congenital heart disease? Isn't it a condition you are born with?
That is correct. The word congenital means born with, and this is different than the more common heart diseases that people acquire sometime after birth either from infection, coronary artery disease, trauma, and other problems.
Does congenital heart disease last a lifetime?
Yes, it does. The congenital heart problem is always there although it can often be made much better as a result of surgery or treatment with a catheter-based therapy. Many children born with heart problems live to be active, normally functioning adults, and there are some heart conditions that people are born with that are so well tolerated that sometimes they are not even discovered until the person is a young adult or even elderly.
What are the treatment options for congenital heart disease for a child and an adult?
That depends on the problem. Sometimes the treatment is nothing. Nothing needs to be done. Sometimes the treatment is surgery. Sometimes this requires more than one operation. Newer treatments have become available in recent years and can be done without surgery. For example, some holes in the heart can be closed with special devices placed while the patient is under local anesthesia using x-rays to guide the placement. For example, placing a coil to plug the vessel without doing surgery can close some abnormal blood vessels.
Is there a cause of congenital heart disease?
There is no single cause of congenital heart disease. Some conditions are inherited; others result from a combination of factors probably including inheritance and environment. The Rubella epidemic during the 1960s caused a large number of congenital heart problems. Research is trying to learn the causes and work to prevent the problems.
Is it possible for patients born with heart disease who watch their diet and exercise to not develop heart disease that has to be controlled by medication or surgery?
A healthy lifestyle is important for everyone. People with congenital heart disease will not prevent problems with their congenital heart disease simply by dieting and exercising. It will preserve their overall health. This is important because people with congenital heart problems are also prone to the same problems as people born without heart defects, such as hypertension and coronary artery disease.
You mentioned children born of mothers who had rubella during pregnancy has me wondering what happens to that child if it is female when she herself becomes pregnant and already has stress on her heart from her disease?
Pregnancy and congenital heart disease is an important topic. How well a woman and the fetus do during pregnancy depends upon the type of heart problem. Any woman who has a heart problem and is planning pregnancy or has become pregnant should see her doctor. Many women with congenital heart disease are able to become pregnant and carry the pregnancy to term, delivering normal babies. For other women, there are risks involved with pregnancy.
I had 5 bypass surgery. How long is it good for?
Bypass surgery is done for coronary artery disease, which is not a congenital heart problem. Internal mammary artery grafts tend to stay open for a long time. More than 90 percent are still open 10 years after surgery. Vein grafts from the legs tend to close down as the years pass. It is impossible to predict how long they will stay open. A healthy lifestyle helps keep them open. You should not smoke, and should eat a low fat diet, exercise regularly, and take aspirin if your doctor recommends it.
Can pregnancy be life threatening to a woman with congenital heart disease?
Yes, it can. There are some conditions that historically carry a higher risk of complications and even death during pregnancy or after delivery. Again, it is very important for any woman with a heart problem to speak to her doctor before pregnancy or when she first learns that she is pregnant.
What happens if congenital heart disease goes untreated?
Some congenital heart defects cause no problems without treatment. Examples are very small holes in the muscles that divide the two pumping chambers. Other heart defects can cause high pressure in the lung, which cannot be reversed with medication or surgery. Other problems can cause weakening of the pump function of the heart, such as leaky valves.
If the congenital heart disease is severe enough, does a patient graduate to the heart failure clinic and possible heart transplant list?
Some severe congenital heart defects can be repaired with one or more operations. Others cannot. Heart transplantation or heart/lung transplantation are sometimes needed even after a successful repair of the heart performed during childhood.
What role does high blood pressure play in congenital heart disease?
High blood pressure does not cause congenital heart disease. People are born with congenital heart disease. High blood pressure carries the same risks in these patients that it does in other patients. It increases the thickness of the left ventricle and can cause reduced function. It increases the risk of heart attack and stroke.
What has happened to the lungs in congenital heart disease that requires a heart/lung transplant?
Some conditions cause high blood pressure in the lungs and permanent changes in the walls of the lung blood vessels. These changes would not improve after heart transplantation. The transplanted heart would fail. The lungs must be transplanted with the heart.
Can a child with this disease expect to live a normal healthy life as an adult?
That depends on the particular type of heart defect and how fully it can be repaired. It may also depend on how early the problem is repaired. Surgery has been performed on children with congenital heart problems since the 1940s and is improving all the time. Despite all that modern medicine has to offer, many problems cannot be fully corrected. Some adults with congenital heart problems are limited with their heart problem.
Can you go into adulthood without realizing that you have a congenital heart disease?
Yes. Many problems are discovered in old age or never discovered at all. It is not uncommon for some atrial septal defects, which are holes between the two receiving chambers of the heart, to be detected in young adults. This does not necessarily cause a problem for these people. Sometimes the problem is not easily repaired. Often it can be repaired once discovered.
I am 31 years old and have mitral heart value prolapse. I am so tired all the time. Could this be because of the prolapse? How do you know when it is right to request another echocardiogram? Am I in any danger?
Mitral valve prolapse is not a congenital heart problem. It is a heritable heart problem. It can cause problems with the heart rhythm. It can also lead to leaky heart valves. This can cause problems with the heart. Many symptoms attributed to mitral valve prolapse in the past have been found to be due to something else. There is no absolute recommendation as to how often to do echocardiograms. This should be decided by you and your doctor based upon your history and physical examination.
Can a person who has a heart murmur feel any symptoms?
The heart murmur itself is simply a sound that blood flow makes in the heart. Symptoms would depend on the cause of the murmur. Some murmurs are normal innocent murmurs in normal hearts. Others indicate a narrowed valve, a leaky valve or a hole in the heart.
I have a child that went through the Fontan procedure (three years ago). He is 7 now. He is doing great. Do adults have success with a Fontan?
I am pleased to learn that your child is doing well. The Fontan procedure has been a great operation for children with some complex heart problems. There are a number of adults who are now living with a Fontan circulation. We are learning more about long-term function and care all the time. The short answer to your question is that there are adults living successfully after the Fontan procedure and living well.

Congenital heart disease is not as common as high blood pressure, coronary artery disease, or some of the other problems discussed today. It does affect 1 percent of all newborns, sometimes in a very mild form. Many of these children are surviving to adulthood and living satisfying, productive lives. Regular follow up is necessary for most adults born with heart problems.

Kevin Mulhern,* MD
Division of Cardiovascular Diseases
University of Iowa Hospitals and Clinics

*Currently Private Practice, Kansas City, KS

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