Adult Congenital Heart Disease

Congenital heart defects occur during fetal development in the womb. For the heart to develop properly, a series of genetically and environmentally determined steps have to take place in a time-dependent manner during this critical period. If one of these steps doesn’t happen at the right time, a defect develops; ramifications extend and can intensify over a lifetime.

Congenital (present at birth) heart disease is the most common birth defect. According to the American Heart Association, nearly 1 in 100 people born in the United States has a congenital heart defect. At least half of this population has reason to be followed for life by health care providers specially trained and expert in the care of individuals with congenital heart disease.

Caring for these patients is the mission of the Congenital Heart Failure and Adult Congenital Heart Disease Program at the Brigham and Women’s Hospital Heart & Vascular Center —a collaboration with Boston Children’s Hospital and the Boston Adult Congenital Heart (BACH) Program. Our Program provides long-term care of patients 16 years and older who have congenital heart disease and related illnesses. It is one of only a handful of programs worldwide that trains leaders in the care of adults with congenital heart disease.

Adult Congenital Heart Disease

Types of Adult Congenital Heart Disease

Our world-renowned physicians are skilled at repairing congenital heart lesions, ranging from the simplest to the most complicated:

Learn more about types of congenital heart disease.
Access our congenital heart disease index.

Risk Factors

In most cases, there is no identifiable cause for congenital heart disease, and it is generally considered to be an inherited condition caused by multiple factors that may be both genetic and environmental. The Congenital Heart Failure and Adult Congenital Heart Disease Program helps patients to understand more about their risk of transmitting congenital heart disease to offspring.

Patients with a congenital heart defect are at lifelong risk for acquiring additional medical and cardiovascular issues. Many of these risks can be reduced by constructing and carrying out a plan of medical assessment and care that continues throughout their lifetime.


There are many types of congenital heart disease, varying in severity and consequence. For many congenital heart defects, there are few or no symptoms. Severe defects, however, often cause symptoms at any age. These symptoms may include:

  • Cyanosis (bluish skin, lips, and fingernails)
  • Fatigue
  • Rapid breathing or shortness of breath
  • Chest pain
  • Poor circulation
  • Palpitations: the sensation of rapid or skipped heart beats
  • Fluid buildup in the lungs
  • Swollen ankles, feet, legs, abdomen, neck
  • Abdominal swelling
  • Heart murmurs
  • Cough
  • Heart failure
  • Lightheadedness or loss of consciousness
Diagnosis of Adult Congenital Heart Disease

Diagnosis of congenital heart disease depends on the type and severity of the defect. Severe defects may be diagnosed before or soon after birth. Less severe defects may not be diagnosed until later in childhood or even later in adulthood. Sometimes, people can go through their entire lives without knowing they have a heart defect.

Our congenital heart disease specialists provide expert evaluation and diagnosis with the aid of the latest in advanced imaging technologies. Along with a careful physical examination, the cardiologist may order one or more of the following tests or procedures:

Treatment for Adult Congenital Heart Disease

Watch Advancing the Care of Inherited Heart Disease video with Dr. Caroyln Ho, Medical Director of BWH Heart and Vascular Genetics Program, below.

Read the transcript for Dr. Ho's video: Advancing the Care of Inherited Heart Disease.

At Brigham and Women’s Hospital, congenital heart disease specialists develop individualized treatment plans for patients based on:

  • Age and maturity
  • Overall health
  • Medical and surgical history
  • Severity and defect type
  • Tolerance for specific medications or procedures
  • Expectations for course of the disease
  • Presence of other conditions
  • Each patient’s values and goals

Treatment may include:


Some milder congenital heart defects can be managed long-term with medications. Medications also are frequently prescribed for patients with severe defects, in addition to procedures performed to repair the defect.

Here are some of the medicines used to treat patients with congenital heart disease:

Minimally Invasive Catheter Procedures

Minimally invasive catheter procedures are usually used to correct simple or moderately complex defects, such as atrial septal defect (ASD) and aortic coarctation.

An ASD is a hole between the upper two chambers (atria) of the heart. This defect allows blood to flow freely between the two chambers. To treat an ASD, a catheter (slender tube) with a small device attached at the end is guided to the upper chambers of the heart. When the defect has been reached, the device is released to plug the hole between the chambers. Over the next several months, natural tissue grows in and around the device to improve heart function.

Aortic coarctation involves a narrowing of the aorta, the blood vessel that conducts nutrient- and oxygen-rich blood from the oxygen-enriched pumping chamber in the heart to “feed” the rest of the body. To treat this condition, a combination of medical, surgical, and catheter-based therapies may be offered. For catheterization, a catheter with a deflated balloon fixed to the end is guided to the narrowing in the aorta. Once there, the balloon is inflated to stretch the aorta and to lessen the blockage. A stent (cylindrical metal tube) may be placed inside the blockage after balloon inflation to “buttress” the area and to keep it open.


One or more surgical procedures may be needed to effectively treat a congenital heart condition. Surgery may be recommended for the following reasons:

  • To repair or replace a heart valve
  • To expand arteries or unblock heart valves
  • To stitch or patch holes in the heart
  • To improve heart muscle efficiency by means of specialty devices or transplantation

Learn more about Adult Congenital Defect Repair.

What You Should Expect

The Heart & Vascular Center is located in the Shapiro Cardiovascular Center, across the street from BWH’s main 75 Francis Street entrance. The Heart & Vascular Center brings together the full range of services in one location, fostering seamless and coordinated care for all cardiovascular patients.

If you are having surgery or a procedure, you will likely be scheduled for a visit to the Weiner Center for Preoperative Evaluation or the Watkins Clinic for pre-operative information and tests.

The day of surgery, you care will be provided by surgeons, anesthesiologists and nurses who specialize in surgery for patients with congenital heart disease. After surgery, you will go to the post-surgical care unit where you will receive comprehensive care by an experienced surgical and nursing staff.

During your surgery, family and friends can wait in the Shapiro Family Center. Staff members will provide surgery updates and caregivers who leave the hospital will be contacted by cell phone.

Learn more about your hospital stay and returning home.

Download Cardiac Surgery: A Guide for Patients

Multidisciplinary Care

The multidisciplinary team of the Congenital Heart Failure and Adult Congenital Heart Disease Program offers comprehensive inpatient and outpatient clinical services to adults with congenital heart disease. This complete care includes a commitment to helping patients maximize their physical, emotional, medical and social wellbeing. Our team of specialists includes cardiologists and physician assistants and nurses experienced in both adult and pediatric congenital heart disease. They collaborate with BWH physician specialists such as electrophysiologists, cardiac surgeons, oncologists, gastroenterologists, hematologists and nephrologists.


The Adult Congenital Heart Association is one of the largest cardiology-based patient and family advocacy organizations, with a mission to advance education, care access and quality of care.

Learn more about congenital heart disease in our health library.

Visit the Kessler Health Education Library in the Bretholtz Center where patients and families can access computers and knowledgeable staff.

Access a complete directory of patient and family services.

Visit the Brigham and Women’s Hospital HealthHub Blog, which features information on a variety of topics, including heart disease.

Watch Advancing the Care of Inherited Heart Disease video with Dr. Carolyn Ho, Medical Director of BWH Heart and Vascular Genetics Program. Read the transcript for Dr. Ho’s video, Advancing the Care of Inherited Heart Disease.


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