Adult Congenital Heart Disease

Congenital heart disease is a problem with the structure of your heart that is present at birth.

The Adult Congenital Heart Disease Center — a joint program of UPMC Children's Hospital of Pittsburgh and the UPMC Heart and Vascular Institute — is the only one of its kind in the region, helping improve the quality of life of adults born with these conditions.

Contact the Adult Congenital Heart Disease Center

Request an appointment online, call 412-864-2614, or email us.

What Is Congenital Heart Disease?

Congenital heart disease (CHD) is a defect to your heart's structure.

Present at birth, a congenital heart defect can include:

  • Abnormally shaped blood vessels.
  • Abnormal connections between the heart and its main blood vessels.
  • Missing or malfunctioning valves.
  • Defects in the walls that separate the heart chambers (commonly called a hole in the heart).

Unlike in the past, many people with these conditions live into adulthood and enjoy a high quality of life.

Causes and complications of congenital heart diseases

The exact cause of CHD is unknown.

Possible causes include:

  • Family history
  • Role of genetics and gene-interactions
  • Role of common exposures (diabetes) or teratogens (alcohol/medications during pregnancy)

Complications

Because heart defects are different, complications can vary.

People with CHD may experience complications such as:

Many patients stop seeing their cardiac specialist during their teen or college years. This is often as a result of absence of symptoms, lack of appropriate follow-up, and — importantly — inadequate transfer of care to an adult congenital specialist to identify these well-known, late-onset complications of CHD.

It's important that a CHD doctor follow your condition — even when you feel fine — to ensure early treatment of any problems that may arise.

CHD and pregnancy

Pregnancy may increase the risk to the health of women with CHD, as well as their baby.

Cardiovascular risks that warrant surveillance throughout pregnancy include:

  • Arrhythmias
  • Ventricular function
  • Severe valve problems
  • Heart failure
  • Anticoagulation issues/monitoring

Coordinated care between a specialist at the Adult Congenital Heart Disease Center and an obstetrician can help reduce these risks and result in a successful pregnancy.

In addition — because some heart defects can be genetic — women with CHD may want to talk with their care team and a genetic counselor before becoming pregnant.

Providing lifelong care for adults with congenital heart disease

Most CHD can be treated with surgery soon after birth.

Surgical repairs help the heart work more normally, but they do not ‘cure’ the problem. Some CHD repaired early in life can re-occur later. Problems that did not need to be repaired during childhood may need treatment in adulthood.

This is why people with CHD need lifelong medical care.

The Adult Congenital Heart Disease Center — a joint program of UPMC Children's Hospital of Pittsburgh and the UPMC Heart and Vascular Institute — is the only one of its kind in western Pennsylvania.

Through our Transition Program, our adult congenital heart specialists work with our pediatric cardiologists to ensure that our patients keep receiving care so they can enjoy a high quality of life.

At the center, we:

Visit the Adult Congenital Heart Disease Center at Children's Hospital's website. Or, call 412-864-2614 to make an appointment.

Symptoms and Diagnosis of Congenital Heart Diseases

Congenital heart disease symptoms

People with congenital heart disease (CHD) may not have symptoms.

When symptoms do occur, they can include:

Diagnosing CHD

Tests your doctor at the Adult Congenital Heart Disease Center may use to diagnose CHD include:

  • Electrocardiogram (EKG), which measures the electrical activity of your heart and can diagnose rhythm problems.
  • Chest x-ray, which can help the doctor view the structure of your heart and lungs.
  • Echocardiogram, which uses sound waves to create images of your heart and blood vessels.
  • Exercise stress test, which tests your heart's electrical activity, your heart rate, and blood pressure during and after exercise.
  • Computerized tomography (CT) scan, which creates images of your heart.
  • Magnetic resonance imaging (MRI) scan, which uses a magnetic field and radio waves to create images of your heart.
  • Cardiac catheterization, which enables your doctor to see the heart's blood vessels and measure the pressure in the individual heart chambers.

Visit the Adult Congenital Heart Disease Center at Children's Hospital's website. Or, call 412-864-2614 to make an appointment.

Learn more about diagnostic tests for CHD

UPMC Patient Education Materials

Congenital Heart Disease Treatment

There are many treatment options for congenital heart diseases (CHD).

Depending on your condition, doctors at the Adult Congenital Heart Disease Center may recommend:

  • Close monitoring - If CHD does not cause symptoms, your doctor may recommend regular check-ups to make sure to address any problems that may develop.
  • Medication - For mild complications, your doctor may recommend:
    • Anticongestive medications that reduce congestion in the blood vessels in the lungs.
    • Anticoagulant drugs that help prevent blood clots.
    • Medications to control heart rate or rhythm problems.
  • Implantable defibrillator - If you have a serious heart rhythm problem that medication cannot control, your doctor may recommend an implantable defibrillator. This device sends a small shock to your heart to restore normal rhythm.
  • Implantable pacemaker - Your doctor may recommend a pacemaker to help control your heart rate.
  • Minimally invasive repair - UPMC doctors can offer minimally invasive heart surgery — such as the Melody pulmonary valve — and closure of septal defects.
  • Open-heart surgery - If your congenital heart defect is too serious to perform minimally invasive techniques, your doctor may recommend open-heart surgery.
  • Heart transplant - Many people surviving to adulthood with CHD may develop severe heart failure, pulmonary hypertension, and/or cyanosis. Among these patients, their doctors may recommend consideration for a heart transplant evaluation.

Visit the Adult Congenital Heart Disease Center at Children's Hospital's website. Or, call 412-864-2614 to make an appointment.

Learn More About Congenital Heart Disease Treatments

UPMC Patient Education Materials

Emmi ™ Patient Education Videos