Children's Hospital Colorado

Adult Congenital Heart Disease

What is adult congenital heart disease?

As babies who are born with pediatric congenital heart disease grow up into adolescents and adults, they have what is known as "adult congenital heart disease." Adult congenital heart disease is caused by a malformation during development of the heart while a baby is still in the womb. This is different than acquired health conditions, like high cholesterol, which occur later in life.

Adults with congenital heart defects may have unique issues (such as a history of heart surgery or other medical issues that occur in adulthood) that require visits with specially trained cardiologists.

Why are adult congenital heart disease specialists needed?

Adult congenital heart disease requires a very specialized team of doctors. For the best treatment outcomes, these doctors should have training and experience in congenital heart defects in children and the impact on adults (such as managing heart disease during pregnancy).

Cardiologists who treat adult congenital heart disease at Children's Hospital Colorado are trained in both adult and pediatric cardiology.

Who gets adult congenital heart disease?

With today's diagnostic tests, cardiologists can usually detect and diagnose congenital heart defects before a child reaches school age. However, in some cases, these conditions go unnoticed until a person becomes an adult.

If you are a newly diagnosed adult with a congenital heart condition, you may have wondered why you didn't experience symptoms of pediatric congenital heart disease. In this case, your underlying defect may not be very severe. It can take many years for some heart defects to cause symptoms.

Learn more about our Adult Congenital Heart Disease Program.


What are the signs and symptoms of adult congenital heart defects?

Congenital heart disease symptoms in children can go unnoticed until a person reaches adulthood. Adults with congenital heart conditions often tell doctors that they suffer from shortness of breath and have an unusual amount of trouble exercising.

Other signs to look for include:

  • Cyanosis, which causes a blue tone to the skin
  • Fainting
  • Abnormal swelling in parts of the body

Some adults report no symptoms at all. If you suspect you may have a congenital heart defect, you should discuss this with your primary care doctor. He or she will do an initial exam and refer you to the Adult Congenital Heart Disease Program if necessary.

How is adult congenital heart disease diagnosed?

Your evaluation typically will include an EKG and an echocardiogram (ECHO). Other types of tests may include an exercise stress test, Holter monitor, cardiac MRI, or cardiac catheterization. Your cardiologist will determine if any of these tests are needed.

If these tests are performed by cardiologists not trained in congenital heart disease, they may be inadequate and need to be repeated to answer all the questions related to your heart condition.

Read more about what to expect during common tests for adult congenital heart disease:

For more information

If you'd like to learn more about adult congenital heart disease, visit:

The Adult Congenital Heart Association

The American Heart Association

Learn more about the Adult Congenital Heart Disease Program at Children's Hospital Colorado.

What adult congenital heart disease treatments are available at Children's Colorado?

To provide the best possible adult congenital heart disease treatment for our patients, we developed the Adult Congenital Heart Disease Program, an integrated program between the Heart Institute at Children's Hospital Colorado and the Cardiac and Vascular Center at University of Colorado Hospital.

We have both pediatric and adult cardiologists, specifically trained to manage this population of patients. These doctors work side by side to get a full picture of what happened to the heart in development that led to a patient's heart defect, and how it was or should be treated. We are experts at monitoring our patients so that they can maintain healthy hearts for decades after their initial treatment.

What to expect from adult congenital heart disease treatment

Depending on the services needed, your care can take place at either Children's Hospital Colorado or University Hospital. We also help young patients make the transition into adult care and we help women with congenital heart defects manage their pregnancies.

Our specially trained electrophysiologists work with heart rhythm issues that are particular to adults with congenital defects. Some congenital heart defects only require monitoring. Others may require a heart catheterization procedure, and heart surgery may be recommended for severe cases.

There also may be special precautions you need to take, such as activity restrictions or antibiotics before dental procedures. Every case is different, and your cardiologist will provide you with personalized treatment and lifestyle recommendations.

Learn more about our Adult Congenital Heart Disease Program.

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Children's Colorado in the news


Dad Advocates for Patients with Congenital Heart Defects

March 22, 2017

Watch the story of a dad who wanted to help other parents make one of the most important choices of their life. David Kasnic started the Pediatric Congenital Heart Association as a resource to help parents make informed decisions about their child's care.