Children's Hospital Colorado

Adult Congenital Heart Disease (ACHD)

What is adult congenital heart disease?

As babies who are born with pediatric congenital heart disease grow up to become adolescents and adults, they have what is known as adult congenital heart disease (ACHD). 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 heart conditions that occur later in life.

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

Why are adult congenital heart disease specialists needed?

Adult congenital heart disease requires a specialized team of doctors. For the best treatment outcomes, these doctors should have training and experience in congenital heart defects and their impact on adults, such as managing heart disease during pregnancy. The Pediatric Congenital Heart Association estimates that the vast majority of adults living with congenital heart disease are not receiving proper cardiology care.

Cardiologists who treat adult congenital heart disease at Children's Hospital Colorado have additional specialty training to care for these unique patients.



When is adult congenital heart disease diagnosed?

With today's diagnostic tests, cardiologists can usually detect and diagnose congenital heart defects in utero (during the mother’s pregnancy), soon after birth or 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, you may have wondered why you didn't experience symptoms in childhood. In this case, your underlying defect may not be 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 disease?

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.

Signs to look for include:

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

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 our Adult Congenital Heart Disease Program if necessary.

How is adult congenital heart disease diagnosed?

Your evaluation typically includes an electrocardiogram (EKG) and an echocardiogram (ECHO), a special ultrasound of the heart. Other types of cardiac 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 in order to diagnose ACHD.

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

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

Depending on the services needed, your care may take place at either Children's Colorado or University of Colorado 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 (arrhythmia) that are particular to adults with congenital heart defects. Some congenital heart defects only require monitoring. Others may require a heart catheterization procedure and, in some cases, heart surgery.

There also may be special precautions you need to take as a patient with ACHD, 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.

Why choose Children's Colorado for adult congenital heart disease treatment?

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

We have both pediatric and adult cardiologists who are 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, as well as how it was or should be treated. We are experts at monitoring our patients so that they can maintain healthy lifestyles for decades after their initial treatment.

Additional congenital heart disease information

To learn more about adult congenital heart disease, visit:


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Children's Colorado in the news

9News

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.

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