Adult Congenital Heart Disease


What Is Adult Congenital Heart Disease?

If you have adult congenital heart disease, or ACHD, it means you are living with at least one defect in your heart or the blood vessels connected to your heart. ACHD is something you were born with, rather than something you develop later in life.

Some people with congenital heart disease aren’t diagnosed until they reach adolescence or adulthood. Others are diagnosed and treated for congenital heart defects as babies or children.

No matter when you were diagnosed, it’s important to continue monitoring your heart health as an adult. You could still develop related conditions that could threaten your life, such as a heart attack or stroke. Many people also need to watch for endocarditis, a common heart infection.

Types of Congenital Heart Disease

There are more than 30 types of congenital heart disease, including:

  • Atrial septal defects: The wall separating the heart’s upper 2 chambers develops a hole. Learn more about atrial septal defects.
  • Congenital valve disease: One or more heart valves doesn’t form correctly. Learn more about congenital valve disease.
  • Patent foramen ovale: This hole in the heart usually doesn’t causes symptoms and doesn’t need treatment. Learn more about patent foramen ovale.
  • Ventricular septal defects: A hole develops in muscle wall between the heart’s lower 2 chambers. Learn more about ventricular septal defects.


What Causes Adult Congenital Heart Disease?

We aren’t always sure why someone is born with a congenital heart condition. But among known causes, the most common include:

  • Illnesses your mother contracted while she was pregnant, such as German measles
  • Medication your mother took while pregnant
  • Genetic causes, meaning the heart condition runs in your family

World-Class Care

Aurora’s Specialized Adult Congenital Heart Disease Care

You’ll receive the most individualized diagnosis and treatment when you work with providers specializing in congenital heart defects and related health issues. At Aurora you will find:

  • Specialized Adult Congenital Heart Disease Center: We created this center so Aurora Health Care’s multidisciplinary team of cardiologists, cardiothoracic surgeons, electrophysiologists and others can work together closely on your care. We stay on top of the latest treatments and focus on life-long care for people with congenital heart issues. Learn more about our Adult Congenital Heart Disease Center.
  • Family-centered care: When a heart defect is hereditary, we often screen and treat multiple family members. Our expert team will treat each of you with patience, care and respect.
  • Surgical expertise: If you need heart surgery, you’re in good hands. Our heart surgeons perform more heart surgeries than any other health system in Wisconsin . Our experience and dedication to your care means you’re in excellent hands.


Adult Congenital Heart Disease Symptoms

Some types of congenital heart issues cause no or very few symptoms. That's why many people don’t even know they have a heart condition until they reach adulthood. They may only learn they have a heart issue if they undergo tests for another condition or if they begin feeling symptoms.

If you do experience symptoms, they can include:

Diagnosis & Treatment

Thorough Evaluation & Treatment for Adult Congenital Heart Disease

To diagnose adult congenital heart disease, your doctor will do a thorough physical exam. You might also undergo additional testing, including:

Learn more about heart and vascular testing and diagnosis at Aurora.

Treatment Options

You should schedule regular checkups if you have congenital heart disease, even if you feel like you’re in good health. You should ideally do so with specialists like those at Aurora’s Adult Congenital Heart Disease Center.

Some people are not diagnosed until adulthood and then need treatment. Others may have undergone a heart repair in childhood and later require follow-up care.

If your heart needs treatment, your doctor may recommend:

  • Medication: Certain prescriptions can help your heart work more effectively, reduce the risk of blood clots or treat an arrhythmia (abnormal heart beat).
  • Catheterization techniques: Your doctor may perform minimally invasive procedures to repair defects, such as closing a hole in your heart.
  • Surgery: We may suggest implanting a device such as a pacemaker or implantable cardioverter defibrillator (ICD) to keep your heart beating regularly. We may also recommend open-heart surgery to repair a defect if your doctor can’t treat the problem through catheterization. Learn more about pacemaker implant, ICD insertion and thoracic surgery.
  • Heart transplant: This surgery could provide an option if your congenital heart disease is extremely serious and can’t be treated with medication or other procedures. Learn more about heart transplants.

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