Cedars-Sinai Guerin
Children's
127 S. San Vicente Blvd., Suite A3600,
Los Angeles, California 90048
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.
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.
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.
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.
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.
"When I was two weeks old, I had my first heart surgery. Now my kid is 8 years old, and I get to watch her grow up."
-- Nick Dakins, Congenital Heart Valve Disease Patient
Nick was just two weeks old when he was diagnosed with transposition of the great arteries, a rare congenital heart defect. He underwent an arterial switch operation as an infant to correct the condition. Years later, as an adult, Nick learned that he had developed an aortic aneurysm and required a valve-sparing operation. His search for specialized care ultimately led him to Dr. Douglas Johnston at the Adult Congenital Heart Disease Program at Northwestern Medicine and Lurie Children's.
Connect to an Expert Congenital Heart Valve Team
The following medical centers are among an elite group of congenital heart programs in the United States, bringing together highly experienced specialists - including cardiologists, interventional cardiologists, cardiac surgeons, and advanced imaging specialists.
Northwestern Medicine and Lurie Children's
675 North St. Clair St.,
Chicago, Illinois 60611
UT Southwestern Medical Center
2001 Inwood Road, 5th Floor,
Dallas, Texas 75390
"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)
“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.
