If you had heart disease would you see a cardiologist? Most of us would answer “yes.” However, over half of all adults with congenital heart disease (CHD) are not under the care of a congenital cardiologist. The reasons why might surprise you.
The term congenital refers to something that is present at birth. Congenital heart disease refers to abnormalities of the heart which have been present since birth. CHD is the most common birth defect, occurring in about 1 in every 100 births. Thankfully, the vast majority of these babies will live well into adulthood. So why aren’t there more adults in congenital heart care? Here are several misconceptions about congenital heart disease:
All cardiologists are the same.
False. There are many types of cardiologists, each treating specific heart problems such as those associated with structural disease, abnormal heart beats, coronary artery disease or heart function. Some cardiologists specialize in congenital heart disease; they treat people born with heart abnormalities. These cardiologists are known as either Pediatric Cardiologists (for children) or Adult Congenital Heart Disease specialists.
Congenital heart disease is a childhood problem.
False. Thanks to advances in medical care, we now expect 90% of children born with a heart defect to live long lives. In fact, there are now more adults with CHD than there are children! The truth is you will never outgrow CHD, therefore, if you have CHD, you need lifelong, congenital, cardiac care.
My congenital heart disease was cured.
False. There is no cure for CHD. Many people have surgeries to repair their heart, however, they are not cured. There may be long-term effects of heart surgery, such as abnormal heartbeats. A cardiologist can often detect problems with your heart before you notice any symptoms. This can keep your heart healthy and avoid hospitalizations.
Idon’t have congenital heart disease.
Maybe False. There are many people who do not know if they have CHD. If you can answer yes to any of the questions below, you may have CHD and should talk to your doctor about seeing a congenital heart disease cardiologist.
Did you routinely see a cardiologist when you were a child?
As a child were you told you had a heart murmur?
Did you have heart surgery during childhood?
Were you ever described as a “blue baby?”
In school, did you have activity restrictions based on your heart?
As a child, did you take antibiotics before going to the dentist?
Congenital heart disease is a common birth defect. There are over a million adults in the United States with CHD, yet many of them do not routinely see a congenital cardiologist. This is often because of misconceptions related to CHD in adults. If you have CHD or suspect that you might, we urge you to talk to your doctor about cardiac care. Under the care of an adult congenital heart disease cardiologist, people with CHD can now live long, healthy lives.
Tracey L. Sisk, RN, BSN, MHA, has been employed at Nationwide Children's Hospital since 1994 with extended experience in the cardiothoracic operating room. Working as both an RN circulator and RN First Assist, she has first hand knowledge of congenital heart defects, their vast variations and surgical repairs.
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