All About Adult Congenital Heart Disease

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What is ACHD? As a cardiologist specializing in this topic, this is a somewhat common question I hear. ACHD stands for Adult Congenital Heart Disease, but it actually occurs at birth though some people may not get diagnosed until later in life.

Did you know that babies can be born with a portion of the heart not properly formed, incomplete or missing? Sometimes these abnormalities are minor and, at times, these abnormalities can be very significant. Babies with major heart defects often have surgery throughout their childhood or sometimes soon after birth.

Because of the amazing advances in heart surgery, these children are now living well into adulthood. There are currently more adults with congenital heart disease than children. It is important for these adults to continue care with a cardiologist specialized in ACHD to make sure they are doing well.

Here are a few questions I’m frequently asked by patients:

I am an adult that had a heart defect at birth. I haven’t had any problems with my heart in a long time. I am seeing an adult cardiologist. Is there a doctor who specializes in my condition who I should be following up with?

As you enter adulthood, it can be somewhat confusing on what type of cardiologist to visit and you may find yourself running into roadblocks if you don’t see the right one. The American College of Cardiology and the American Heart Association has developed guidelines for taking care of adult patients with CHD. The most important factor is to find a doctor who is knowledgeable about these rules.

Congenital Heart defects can be classified into three categories: simple, moderate and complex, and it is important for you to know what type of heart defect you have. If you have moderate or complex congenital heart defects, you will need to find the right cardiologist who is well trained and experienced in your specific heart defect. Patients with congenital heart defects don’t experience the same symptoms as patients with acquired heart disease, such as chest pains from heart blockages.

I was born with a congenital heart defect and I am now 18 years old. Will my Pediatric Cardiologist continue to see me or should I move on to an adult doctor?

Many pediatric cardiologists will continue to see you depending on their expertise. Most importantly, you need to find someone who can transition you from being a child to a well-informed adult. As adults, we have to learn about our heart defects, limitations and potential symptoms. You also want to educate yourself on healthy lifestyles and pregnancy. You need a cardiologist who can help you with this, along with a primary care doctor as well.

My child was born with a congenital heart defect. He has had the surgeries to correct it and has been fine with no problems. Should I continue to follow up with a cardiologist even though everything is fine?

Absolutely, you should follow up with a cardiologist! Patients with ACHD don’t want to wait until they have symptoms to receive heart care. You want to prevent the development of symptoms by having scheduled follow-ups. Patients with congenital heart defects often need ‘tune-ups’ to help prevent symptoms and improve their quality of life.

Congenital heart disease is detected in 10% of adults for the first time. While this can be a frightening diagnosis, remember there are available resources, programs and specialists to help you and your family manage this disease.

*Wendy Bradley, Ochsner employee and wife of a patient with CHD, also contributed to this article.

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