Adult Congenital Heart Disease (ACHD)

Adult Congenital Heart Disease (ACHD) refers to heart defects that are present from birth but continue or reappear in adulthood. Thanks to advances in medical care, more children born with congenital heart problems are surviving into adulthood — but many need lifelong follow-up.

ACHD is not the same as heart disease caused by lifestyle (like blocked arteries); it’s caused by abnormal development of the heart before birth.

Common Types of Congenital Heart Defects in Adults

Some common congenital heart conditions that can affect adults include:

Atrial Septal Defect (ASD) – a hole in the wall between the heart’s upper chambers
Ventricular Septal Defect (VSD) – a hole in the wall between lower chambers
Tetralogy of Fallot – a complex combination of four heart problems
Coarctation of the Aorta – narrowing of the major artery (aorta)
Transposition of the Great Arteries (TGA) – abnormal positioning of main arteries
Single Ventricle Defects (e.g., Fontan circulation)

Some adults may have had surgery as a child but still need care later in life due to:

Symptoms

Symptoms may appear or return in adulthood, even years after childhood surgery:

Shortness of breath
Fatigue or inability to exercise
Palpitations or irregular heartbeat
Chest pain
Cyanosis (bluish skin or lips)
Swelling in legs or abdomen
Fainting or dizziness

How Is ACHD Managed?

ACHD care must be lifelong and specialized. General cardiologists may not be familiar with the unique needs of congenital patients, which is why ACHD specialists are essential.

Treatment options may include:

Regular monitoring with imaging tests (echocardiogram, MRI, etc.)
Medications for heart failure or arrhythmias
Interventional procedures like catheter-based repairs
Surgery to correct or re-repair defects
Pacemakers or defibrillators if needed
Pregnancy counseling (for women with ACHD)
Lifestyle guidance: healthy weight, activity, stress control

Why Specialized ACHD Care Matters

ACHD patients face unique challenges — mixing childhood conditions with adult health issues like high blood pressure or diabetes. Comprehensive ACHD centers offer: