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Adult Congenital Heart Disease

Adults with congenital heart disease have unique needs for ongoing care and support. The Center for Adults with Congenital Heart Disease (ACHD) at the Washington University and Barnes-Jewish Heart & Vascular Center offers comprehensive care that is unmatched in the Midwest. 

Our team can manage the entire breadth of congenital heart disease, from simple to complex problems, including patients who have previously undergone the Fontan procedure.

Unmatched Adult Congenital Heart Care in the Midwest

Our ACHD program, begun in 1992, is one of the largest in the Midwest for adults with congenital heart defects. We actively manage the treatment of approximately 2,000 patients, giving us expertise to deliver care you can rely on. Patients and physicians choose us for our:

  • Board-certified physicians: Our cardiologists and surgeons are board certified in ACHD. This relatively new certification is uncommon in most medical centers.
  • Nationally accredited program: Ours is one of just a few dozen ACHD programs in the U.S. accredited by the Adult Congenital Heart Association. This recognition acknowledges our ability to skillfully handle even the most complex cases. We also provide a complete array of services to anyone with ACHD.
  • Comprehensive care: The Center for Adults with Congenital Heart Disease is equipped to provide the highest level of care to this unique population of patients. We work closely with St. Louis Children’s Hospital to treat people from birth throughout their lives.
  • Surgical expertise: Our team performs all types of surgical repair for congenital heart disease in adults. We provide heart transplantation, arrhythmia treatment, pacemaker and device placement, and pregnancy care for patients with ACHD.
  • Minimally invasive therapies: We use tiny incisions to perform cardiac catheterization and percutaneous intervention procedures. These techniques enable us to implant replacement heart valves using a catheter, thereby avoiding open heart surgery. 

Treating Adults With Congenital Heart Disease

We provide expert care to patients with any degree of congenital heart defect. Our services include:

  • Highly skilled cardiothoracic surgery: You have access to surgical consultation and treatment by specially trained adult and pediatric cardiovascular surgeons. We offer advanced therapies including heart valve replacement and repair. We also deliver heart transplantation and multi-organ transplant through our transplant center.
  • Collaborative long-term care: Your cardiovascular and internal medicine care often includes support from experts in psychiatry, psychology, social work and other related specialties.
  • Transition to adult care: Moving from pediatric to adult providers can be emotional. Our formal transition program supports young people through this transition. We can continue to consult and collaborate with the pediatric cardiologists who may have cared for you as a child or adolescent.
  • Maternal heart care: We provide specialized reproductive care for women with congenital heart disease. You receive comprehensive care during pregnancy and delivery, in collaboration with our specialists in high-risk obstetrics.
  • Electrophysiologic evaluation and intervention: We use traditional and noninvasive ablation and other techniques to control arrhythmia.
  • Pulmonary hypertension management: We have a joint program with Washington University experts in the management of pulmonary hypertension. This condition, which causes high blood pressure and breathlessness, is associated with congenital heart disease.
  • Experienced round-the-clock care: Our dedicated doctors and nurses offer 24-hour availability for telephone consultations.

What Are Congenital Heart Defects in Adults?

Approximately 1 percent of newborns in the U.S. have some form of congenital heart disease (CHD), meaning they were born with a structural defect in the heart. Congenital heart defects range from minor conditions to complex or potentially life-threatening structural abnormalities.  

As these children grow up, they continue to face medical issues. These issues may be related to the original defect or later surgical interventions. 

Adult congenital heart defects we treat

We treat all types of ACHD patients, including: 

  • longtime congenital heart patients who have one or more cardiac operations during childhood or adolescence
  • first-time surgical patients who have congenital heart disease but have not received surgical treatment
  • adults with a new diagnosis of a congenital heart defect that previously went unrecognized
  • people seeking a second opinion from our center of excellence

Imaging and Diagnosis of Adult Congenital Heart Disease

Our center uses all available diagnostic tools to assess potential ACHD and monitor your well-being. We use state-of-the-art equipment for all types of imaging. Learn more about diagnostic testing for heart disease.

Depending on the issue affecting your heart and previous treatment, imaging studies may include:

  • diagnostic catheterization, which uses a tiny camera on a catheter (fine, flexible tube) inserted through a puncture in a blood vessel to pinpoint heart defects
  • transthoracic echocardiography (echo), or TTE, which uses sound waves to produce an image of your heart
  • transesophageal echo (TEE), which uses a wand placed in your esophagus (tube that runs from the throat to the stomach) to provide very clear pictures of your heart
  • intracardiac echo (ICE), a catheter-based procedure to take pictures inside your heart
  • cardiac MRI and cardiac CT to create 2D and 3D pictures and videos of your heart
  • cardiac PET, a test not commonly available, to show healthy and damaged heart muscle, including heart disease or damage to your heart
  • electrophysiology studies to monitor and correct arrhythmia and heart rhythm disorders
  • 3D printing to create models of your heart for presurgical planning

Research and Clinical Trials for Congenital Heart Disease

The Center for Adults with Congenital Heart Disease offers patients the opportunity to participate in selected clinical trials and research studies. You may be able to gain access to new investigational therapeutic options that are not ordinarily available. Other research opportunities seek to develop new knowledge to help future patients with ACHD. Learn more about our innovation.

Our Congenital Heart Disease Team

Our specialized cardiologists, recognized authorities and respected colleagues work together to meet each patient’s specific needs. Find a doctor.

Your care team may include:

  • adult and pediatric cardiologists (doctors who specialize in heart problems) who are board certified in adult congenital heart disease
  • adult and pediatric cardiothoracic surgeons who are board certified in congenital heart surgery
  • radiologists who specialize in analyzing images of structural heart defects to accurately diagnose your condition
  • electrophysiologists, cardiologists who are experts in heart rhythm disorders
  • interventional cardiologists who perform minimally invasive, catheter-based procedures
  • expert nurses, including a nurse practitioner and nurse coordinators who specialize in ACHD
  • mental health specialists, including psychiatrists, community mental health providers and a neurocognitive clinic for patients with Down syndrome 

Contact Us

To make an appointment at the Center for Adults with Congenital Heart Disease at Washington University and Barnes-Jewish Heart & Vascular Center, call 888-998-7953.