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Adult Congenital Heart Disease

If you were born with a heart problem (also known as a congenital heart defect or congenital heart disease), you probably take special care of your heart. Even though modern treatments allow most children with congenital heart disease to live until adulthood – and often into old age – having a heart defect at birth increases your risk of developing other cardiovascular problems later in life.

At VCU Health Pauley Heart Center, we make it easy for you to keep an eye on your heart health while continuing to enjoy an active, fulfilling life. Our uniquely trained adult congenital heart disease (ACHD) team monitors and cares for people treated for heart problems during childhood.

Whether you need a simple screening, want a second opinion or have concerns about sudden symptoms, you’ll find unmatched cardiovascular care and support right here in Richmond.

Understanding adult congenital heart disease

Learn how an ACHD specialist helps you stay healthy and live well with your heart condition.

What is an adult congenital heart disease specialist?

ACHD specialists are doctors who are board-certified in both cardiology and adult congenital heart disease. Because of their extra level of training, they know how to take care of adult hearts with congenital conditions. They also keep on top of the latest medical and scientific guidelines related to ACHD complications, symptoms and treatments

Congenital heart defects we care for

Congenital heart defects are the most common type of birth defects. At Pauley Heart Center, we care for adults born with simple, moderate or complex heart defects. Conditions include:

  • Atrial septal defect
  • Bicuspid aortic valve disease
  • Coarctation of the aorta
  • Ebstein's anomaly
  • Hypoplastic left heart syndrome
  • Marfan syndrome
  • Patent ductus arteriosus
  • Tetralogy of Fallot
  • Transposition of the great arteries
  • Truncus arteriosus
  • Ventricular septal defect

We also care for patients who didn’t realize they had a congenital heart condition until they reached adulthood and started having symptoms for the first time.

When and why should I see an ACHD specialist?

If you were born with a heart defect (or a medical condition that may harm the heart), and you had heart surgery as a child, you should see an ACHD doctor at least annually for a heart check-up. That’s because adults with congenital heart disease may eventually develop an irregular heartbeat (arrhythmia)heart failure or other cardiovascular complications.

Even if you feel well and don’t have troubling symptoms, regular visits with a specialist can catch problems early – when they are often less severe and easier to treat or repair. In addition to routine check-ups, you should also see your ACHD physician when you:

  • Are about to experience a major life event, such as getting married or starting a new job
  • Are thinking about getting pregnant
  • Want to know if it’s safe to take part in certain recreational activities or start a new exercise regimen
  • Have new symptoms such as shortness of breath, dizziness, chest pain, a racing heartbeat or leg swelling

Based on the severity of your congenital defect and your current overall health, you and your ACHD specialist will decide how often you need monitoring and whether your visit should take place in person or via a virtual (telehealth) appointment.

Why choose Pauley Heart Center for ACHD care

The ACHD program at Pauley Heart Center is one of the most comprehensive programs of its kind in Virginia. Here’s why patients choose us for ACHD care.

We facilitate transitions to adult cardiology care.

If your child has a congenital heart defect, they will continue seeing their pediatric specialist until around age 18. Together with pediatric cardiologists, we help teens begin transitioning from their childhood specialist to an ACHD specialist. This process is key to making sure your child is fully aware of their medical history, including the name of their condition and all the treatments they’ve had. It also helps ensure your child receives seamless cardiovascular care once they reach adulthood. Learn more about pediatric cardiology care at Children’s Hospital of Richmond at VCU.

You have a team of experts dedicated to your health and well-being.

In addition to routinely seeing an ACHD doctor who knows your health history, you have access to our nurse navigator, social workers, mental health specialists, cardiovascular imaging specialists and advanced practice providers who help educate patients and their families. Each of our team members is specially trained to care for people with ACHD.

We help you stay healthy at every stage of life.

Whether you want to start a family or need advice about heart-healthy lifestyle choices, we can coordinate referrals for important medical or support services. This includes preconception counseling, high-risk pregnancy care, genetic testing, nutrition counseling or transplant medicine. 

We are at the forefront of new ACHD research.

Our team is part of the Alliance for Adult Research in Congenital Cardiology. This network of physicians and scientists from across the country works together on research to better understand ACHD and improve long-term outcomes among people born with congenital defects.

Advanced adult congenital heart disease treatment

While our goal is to help you prevent cardiovascular complications from occurring in the first place, we also have expertise in managing any problems that arise. As our patient, you have access to the full range of medical, surgical and interventional (catheter-based) services available at Pauley Heart Center. These include:

If you need treatment for a heart problem, you can take comfort knowing we offer the most advanced tools and techniques available. Whenever possible, we use minimally invasive procedures that may shorten or eliminate your hospital stay and help you recover more quickly, with less pain and fewer (if any) scars.

Meet our team leader

Sangeeta Shah, MDSangeeta Shah, M.D., pictured right, leads our ACHD program. Originally from New Orleans, Dr. Shah is fellowship-trained and board-certified in adult congenital heart disease. In addition to caring for patients, she has written several medical journal articles about ACHD and has lobbied on Capitol Hill to advocate for appropriate ACHD care.  

Contact us

For patients

To schedule an appointment with an ACHD provider at Pauley Heart Center, please call (804) 628-4327press 4, weekdays from 8 a.m. to 5 p.m., or request an appointment online.

For physicians

To refer a patient for ACHD subspecialty care, please call (804) 628-4327, press 5.