For many people born with a heart defect, treatment may not be necessary until adulthood. As your heart grows, you might need surgeries, medications, and treatments.

People often think of congenital heart disease as a health concern primarily involving infants and children. However, these children grow up to become adults living with the condition.

It’s worth noting that there are no “cures” for congenital heart disease. However, there are well researched treatments that can improve heart function and surgeries that can correct anatomic issues.

Read on to learn about the types of congenital heart disease and how to manage them as an adult.

Being born with congenital heart disease means there’s a problem with the structure and function of the heart.

In many cases, while a fetus is developing, a part of the heart doesn’t develop typically. Some heart defects are relatively minor and heal on their own. Others are more complex, and you’ll need surgery to treat them.

Types of congenital heart disease include:

The signs and symptoms of congenital heart disease can differ based on your age, the type of heart disease you have, and how severe it is.

Some common signs and symptoms in adults include:

If you’ve never received a diagnosis of congenital heart disease, it’s important to get a prompt medical evaluation of any new symptoms. Chest pain and shortness of breath are especially concerning.

If you have a known congenital heart defect, you should contact your doctor as soon as possible if you have new symptoms or worsening existing symptoms.

Experts don’t know why most heart defects happen.

Some types of congenital heart disease have a hereditary component, which means you might have inherited genetic irregularities from one of your parents.

Other birth defects may be triggered by environmental factors or the health and lifestyle choices of the birthing parent before and during pregnancy. Many happen completely randomly.

Some risk factors for congenital heart disease include:

  • the use of certain medications during pregnancy, including retinoic acid for acne, angiotensin-converting enzyme inhibitors for high blood pressure, and others
  • family history of congenital heart disease
  • medical conditions affecting the birthing parent, such as the viral infection rubella
  • smoking during pregnancy
  • alcohol use during pregnancy
  • genetic syndromes, such as Down syndrome and Turner syndrome

Although you may not be able to prevent congenital heart disease, you can take steps as an adult to help prevent or lower your risk of further health complications.

For example, you could:

  • Exercise regularly under the guidance of your doctor or a cardiac rehabilitation specialist.
  • Follow a heart-healthy eating plan, such as the Mediterranean diet or the Dietary Approaches to Stop Hypertension diet.
  • Get regular checkups for your heart and your overall health.
  • Maintain a moderate body weight that’s healthy for you.
  • Manage your blood pressure, cholesterol, and blood sugar levels.
  • Stop smoking, if applicable.

Managing adult congenital heart disease involves regular monitoring and testing by a cardiologist. If your condition is more serious, you might need medications and multiple procedures.

For example, congenital heart disease can lead to abnormal heart rhythms, also called arrhythmias. You might need antiarrhythmic medications or an implanted device, such as a pacemaker.

The 2018 American College of Cardiology and American Heart Association Guideline for the Management of Adults With Congenital Heart Disease suggests that the best outcomes occur when a multidisciplinary team of specialists cares for you.

This includes but isn’t limited to:

  • Congenital heart disease specialists: These can include cardiologists, surgeons, and others.
  • Electrophysiologists: These are heart rhythm specialists.
  • Interventional cardiologists: These are specialists in stent placement and other surgical procedures.
  • Pulmonologists: These are respiratory, or breathing, specialists.

The outlook for any individual with congenital heart disease depends on the type and severity of the condition and when and how they received treatment for it.

According to the Centers for Disease Control and Prevention (CDC), 93% of infants who survive their first year with congenital heart disease go on to live until at least the age of 35 years. A 2023 study suggests that 75% of people who reach the age of 18 years with congenital heart disease will live into their 60s.

If you receive proper treatment for congenital heart disease, you can live a healthy, active life. You might need ongoing surgeries and treatment, but newer procedures are helping people live longer and maintain a high quality of life.

Living with adult congenital heart disease can present a range of health challenges and affect your quality of life.

But by being proactive about your health and sticking to a lifestyle that promotes healthy heart function, you may be able to avoid some complications that would otherwise affect your health and life expectancy.

If you feel that your healthcare team isn’t providing you with the care you need, don’t hesitate to get second opinions. Speak with cardiologists and specialists until you feel your condition is in good hands.