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Adult Congenital Heart Disease 

Leaders in Adult Congenital Heart Disease Care

If you’re an adult living with congenital heart disease, understanding your condition is key to managing it.

At Emory Healthcare, we do more than treat your condition. We provide education, support and lifelong care to help you live well at every stage of life. Together, we’ll create a care plan that reflects your goals and helps you reach them.

What is Adult Congenital Heart Disease?

Congenital heart disease (CHD) refers to structural heart conditions present at birth. Also called congenital heart defects, these conditions can affect the heart’s chambers, valves or blood vessels and impact blood flow. CHD is a lifelong condition. While many people are diagnosed in childhood, some are not identified until their teens or adulthood. When managed in adults, it’s called adult congenital heart disease (ACHD).

What are the Types of Adult Congenital Heart Disease?

There are three main types of ACHD:

Blood vessel disorders

  • Anomalous pulmonary venous return
  • Aortic coarctation
  • Patent ductus arteriosus (PDA)
  • Transposition of the great arteries (TGA)
     

Heart valve conditions

 
Septal defects

  • Atrial septal defect (ASD)
  • Patent foramen ovale (PFO)
  • Tetralogy of Fallot (ToF)
  • Ventricular septal defect (VSD)

What are the Symptoms of Adult Congenital Heart Disease?

ACHD symptoms vary based on your age, condition and overall health.

Common symptoms include:

  • Blue skin, lips or nails (cyanosis)
  • Fatigue or getting tired quickly with activity
  • Shortness of breath (dyspnea)
  • Heart palpitations (pounding heartbeat)
  • Irregular heartbeat (arrhythmia)
  • Swelling in the ankles, feet or hands (edema)
  • Heart murmur (whooshing sound)
  • Weak pulse
  • Unusual sleepiness 

What are the Risk Factors for Adult Congenital Heart Disease?

Certain factors during pregnancy can increase the risk of congenital heart disease. Risk factors include:

  • Family history of congenital heart disease or genetic conditions 
  • Infections during pregnancy, such as rubella or influenza 
  • Type 1 or Type 2 diabetes during pregnancy 
  • Certain medications during pregnancy, including lithium and isotretinoin 
  • Smoking during pregnancy 
  • Alcohol use during pregnancy 

Emory Heart & Vascular offers cardiovascular genetic testing and counseling to assess risk and help with family planning.

How is Adult Congenital Heart Disease Diagnosed?

If congenital heart disease is found in adulthood, your cardiologist will use a combination of tests to evaluate your heart’s structure, blood flow and rhythm.

Common tests include:

  • Blood tests to check your overall health
  • Imaging tests such as echocardiogram, CT scan or MRI to view your heart
  • Electrocardiogram (ECG) to measure heart rhythm
  • Cardiac catheterization to assess blood flow and pressure
  • Electrophysiology (EP) studies to map electrical activity in the heart
Frequently Asked Questions About Adult Congenital Heart Disease
  • Congenital heart disease is the most common birth defect in the United States. Today, nearly 2 million adults are living with ACHD, thanks to advances in care and improved survival.

  • No. Adult congenital heart disease is present at birth, even if it isn’t diagnosed until later in life. Other types of heart disease develop over time due to factors such as aging, smoking, obesity, high blood pressure or high cholesterol.

  • Not always. Some conditions can be managed with medication or minimally invasive procedures.

    If you need surgery or a heart transplant, our team performs hundreds of procedures each year with outcomes that rank among the best in the nation. Learn more about treatment and management options for ACHD.

  • Some forms of congenital heart disease can run in families. Genetic testing can help assess your risk before pregnancy.

    Our Cardiovascular Genetics team can identify inherited conditions and create a personalized care plan before, during and after pregnancy. Learn more about cardiovascular genetic testing and counseling.

We offer the most advanced, comprehensive treatments and care to help you live your best, healthiest life on your terms.
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