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Born with it.
Not defined by it.

Congenital heart valve disease is more common than most families realize. With the right care, many patients go on to live full, active lives.

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Born with it.
Not defined by it.

Congenital heart valve disease is more common than most families realize. With the right care, many patients go on to live full, active lives.

"Patients and parents are not alone. About 1 in every 100 babies are born with a congenital heart defect."

-- Dr. Melita Viegas, Associate Director, Pediatric and Congenital Cardiac Surgery,
Guerin Family Congenital Heart Program, Cedars-Sinai (Los Angeles, California)

Congenital heart disease is the most common type of birth defect. It impacts about 1 in 100 babies worldwide. Heart valve defects, which affect the flow of blood through the body are also very common. According to medical research, about 1-2% of the population has a bicuspid aortic valve. Thanks to advances in pediatric cardiology and surgery, about 90% of children born with congenital heart defects survive into adulthood. As a result, the adult congenital heart disease (ACHD) population is rapidly growing. Reports suggest that approximately 2 million adults in the United States are living with ACHD.

In this video, Dr. Melita Viegas shares 6 important facts about congenital heart valve disease.

Congenital Heart Valve Disease Types

It is very important for patients and their parents to understand the specific type of heart valve disease that is impacting the heart. In general, most valve issues fall into two main categories: stenosis and regurgitation.

Stenosis means the valve is too narrow and doesn't open fully, which can restrict blood flow. Regurgitation means the valve is leaky and doesn't close properly, allowing blood to flow backward instead of moving forward efficiently.

Diagram comparing heart valve stenosis (narrow opening) and regurgitation (leaky valve)

What are the Symptoms?

The symptoms of heart valve disease can be confusing. Some patients feel completely normal, while other patients may develop symptoms gradually. It's important to learn what changes in the heart may signal that stenosis or regurgitation is progressing and/or needs attention.

Illustration of symptoms associated with congenital heart valve disease

Key symptoms to watch for include:

  • Shortness of breath (especially during activity or when lying down).
  • Fatigue or reduced energy levels.
  • Decreased ability to exercise or keep up with normal activities.
  • Chest pain or chest discomfort.
  • Heart palpitations or irregular heartbeat.
  • Dizziness or lightheadedness.
  • Fainting (syncope).
  • Swelling in the legs, ankles, or feet.

How Is Heart Valve Disease Treated?

There are generally two main approaches to treating congenital heart valve disease: surgical procedures and transcatheter (minimally invasive) therapies. The right option depends on many factors, including the patient's age, the specific valve involved, how severe the condition is, and the patient's overall health.

Illustration of surgical and transcatheter approaches to congenital heart valve treatment

Surgical treatment has been the traditional approach for many years and remains the best option for certain patients — especially younger individuals or those with complex anatomy. Surgery may involve repairing the existing valve (which is often preferred when possible) or replacing the valve with a mechanical or biological valve.

Transcatheter therapies are less invasive procedures performed through a small tube (catheter), usually inserted through a blood vessel in the leg or chest. These approaches — such as transcatheter valve replacement or repair — do not require opening the patient's chest and often result in shorter recovery times.

"It's a very exciting time for congenital heart valve disease patients. New technologies have really taken off. There's a boom in research and innovation."

-- Dr. Stephen Nageotte, Director, Congenital Catheterization Lab in the Smidt Heart Institute,
and the Guerin Family Congenital Heart Program, Cedars-Sinai (Los Angeles, California)

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Five out of five stars

"When I learned that I needed heart valve replacement surgery due to congenital heart valve disease, I wanted the very best hospital. The team at Cedars-Sinai did a great job."

-- Marisa Dominguez, congenital heart valve disease patient

Free eBook To Help You Learn More

To learn more about the congenital heart valve disease, click here to download our new eBook, "Congenital Heart Valve Disease: What 8 Questions Should You Ask?" You can share this eBook with your family and friends.

Connect to an Expert Congenital Heart Valve Team

The Smidt Heart Institute has earned top-level accreditation from the Adult Congenital Heart Association, placing it among a select group of elite centers in the United States. Its physicians—part of the world-class Guerin Family Congenital Heart Program at Cedars-Sinai Guerin Children's—use advanced technology to diagnose and treat heart defects in children.

Patients and parents often choose Cedars-Sinai Guerin Children's because it combines advanced pediatric expertise with a rare, lifelong approach to congenital heart care. This unique program treats patients from before birth through adulthood, meaning families don't have to switch hospitals or care teams as the child grows.

To learn more how Cedars-Sinai Guerin Children's may be able to help you or your loved one, please call (310) 340-6578.