Adult Congenital Heart Disease Clinic Overview

A surgical team performs robot-assisted heart surgery. Robot-assisted heart surgery team at Mayo Clinic

A Mayo Clinic surgeon and surgical team help with robot-assisted heart surgery while another surgeon sits at a remote console controlling the robotic arms.

Adults with congenital heart disease find the specialized care they need at the Adult Congenital Heart Disease Clinic. You'll meet with experts who listen to your concerns, assess your health and offer care options based on your needs. They have specialized training in diagnosing and treating all congenital heart diseases, including the serious, complex or rare. At Mayo Clinic in Florida, people with Marfan syndrome are seen at the Adult Congenital Heart Disease Clinic.

Each year doctors at Mayo Clinic in Arizona, Florida and Minnesota evaluate and treat nearly 12,000 adults with congenital heart disease. Our heart specialists are nationally recognized for expertise in cardiology and cardiovascular surgery. This widely respected team is dedicated to advancing the field through researching, adopting new technology and teaching the next generation of health care professionals.

A team focused on you

Our adult congenital heart disease team includes doctors trained in heart disease (cardiologists) and heart surgery (cardiovascular surgeons). They work closely with specialists in transplantation, pulmonary hypertension, liver disease (hepatology), clinical genomics, fetal and maternal care, and other areas. No matter your condition or the symptoms you're living with, this multidisciplinary team can help you. These experts focus their collective knowledge on finding solutions.

With Mayo Clinic's emphasis on collaborative care, specialists at each of its sites — Arizona, Florida and Minnesota — interact closely with one another.

A personalized treatment plan

Together your Mayo Clinic care team works with you to develop a treatment plan tailored to your condition, goals and needs. There is an ever-growing group of adult congenital heart disease survivors. Many of these people are living with complex heart rhythm disorders. At the Adult Congenital Heart Disease Clinic, they'll be under the care of heart rhythm experts who helped establish national guidelines for the American Heart Association, the Heart Rhythm Society and the American College of Cardiology.

Throughout your life, your care team is available to consult on whatever concerns you have — minor surgery, pregnancy, heart surgery. Our cardiologists, nurse coordinator, nurse practitioners, social worker and nurses create a seamless experience, offer advice on your condition and provide continuing care. Clinic nurses are available by phone to answer your questions. If you wish, your cardiologist will share your treatment plan with your primary doctor and talk through any questions. At Mayo Clinic in Rochester, Minnesota, you may be seen in the Cardiovascular Obstetrics Clinic.

People with congenital heart disease who come to Mayo Clinic benefit from our continual innovations in surgery, technology and processes. Our doctors and heart surgeons use advanced imaging, therapies and transcatheter procedures, as well as valve prostheses. They also use state-of-the-art heart rhythm therapies and methods that repair heart defects without opening the chest wall — an approach called minimally invasive heart surgery.

People who come to Mayo Clinic with a serious or complex heart defect that can't be repaired might benefit from the Heart Transplant Program. Our transplant specialists use advanced technology, specialized procedures and teamwork to help people with serious heart diseases.

Nationally recognized expertise

Mayo Clinic campuses are nationally recognized for expertise in cardiology and cardiovascular surgery:

  • The Adult Congenital Heart Disease Association (ACHA) has designated the Adult Congenital Heart Disease (ACHD) Clinic at Mayo Clinic's campus in Rochester, Minnesota, as an ACHA ACHD Accredited Comprehensive Care Center.

    This accreditation was achieved because the ACHD Clinic meets personnel requirements, offers specific medical services, and uses policies and procedures that help ensure the highest level of care for adults with congenital heart disease. This accreditation also signifies that Mayo Clinic has doctors with special expertise in diagnosing and treating congenital heart disease.

  • Mayo Clinic in Rochester, Minnesota, Mayo Clinic in Phoenix/Scottsdale, Arizona, and Mayo Clinic in Jacksonville, Florida, are ranked among the Best Hospitals for heart and heart surgery by U.S. News & World Report.
  • Mayo Clinic Children's Center in Rochester is ranked the No. 1 hospital in Minnesota, and the five-state region of Iowa, Minnesota, North Dakota, South Dakota and Wisconsin, according to U.S. News & World Report's 2023-2024 "Best Children's Hospitals" rankings.

Mayo Clinic in Rochester, Minn., Mayo Clinic in Jacksonville, Fla., and Mayo Clinic in Phoenix/Scottsdale, Ariz., are ranked as high performing for aortic valve replacement and transcatheter aortic valve replacement (TAVR) procedures by U.S. News & World Report. "High performing" is a designation given to the top 16% of TAVR programs across the nation (600+ programs). U.S News & World Report ranked hospitals for this procedure for the first time in 2022-2023.

Mayo Clinic is top-ranked in more specialties than any other hospital and has been recognized as an Honor Roll member according to the U.S. News & World Report's 2023-2024 "Best Hospitals" rankings.

Research to improve diagnosis and treatment

Interventions for congenital heart disease and related conditions are rapidly evolving. Our world-class physician-scientists and researchers have long been leaders in congenital heart disease research in new diagnostic tests, appropriate timing for treatments and new treatments for congenital heart disease. Research projects include:

  • Advancing care of adults with complex heart rhythm disorders.
  • The effect of earlier atrioventricular valve intervention on survival after the Fontan operation.
  • Sudden cardiac death in adults with Eisenmenger syndrome.
  • A rare cause of valvular disease.
  • Congenital heart disease and reproductive risk.

Ask your doctor if you might be eligible for any of the active clinical trials in congenital heart disease. Some Mayo clinic-initiated trials are available only to people being treated at Mayo Clinic.

Our researchers have published hundreds of articles describing long-term results of treatments for many congenital heart diseases. See a list of publications about congenital heart disease by Mayo Clinic doctors on PubMed, a service of the National Library of Medicine.

Learn more about research in the Cardiovascular Research Center.

Appointments

You may be referred by your primary doctor, or you may make an appointment without a referral. Not all services may be available at all locations. Please confirm when you request an appointment.

Heather's story – A personalized approach to heart health

[Music playing]

Heather Lister: When I was born, I was diagnosed with a heart murmur and was checked every year. The only limitations I had were, I was told, I had to take antibiotics any time I went to the dentist. And it wasn't until I was in my 20s that I decided to take charge of my health care. And I found a cardiologist. And he did a very thorough examination, or so I thought at the time. And he told me that I actually had a bicuspid aortic valve. I was going once a year. And my valve looked OK. So I was put off to two years.

More recently, I couldn't catch my breath as easily as I used to. I felt tired. I just didn't feel right. So I sought the opinion of the cardiologist, who told me that my valve was fine. And he would see me in two years. I just wanted to be sure. So I decided to go to Mayo and get a second opinion.

Carolyn Landolfo, M.D., Cardiovascular Diseases, Mayo Clinic: Heather had been told on the outside that she had nothing to worry about. But some patients who have a bicuspid aortic valve also have an abnormality of their aorta.

Heather Lister: No one had ever mentioned a connection between my valve and the possibility of an aortic aneurysm.

Dr. Landolfo: An aortic aneurysm is a condition where the aorta becomes enlarged. The layers of the aorta become weakened. And they're prone to either tearing or even rupturing. And that can be obviously catastrophic.

Heather Lister: I felt like I had a ticking time bomb in my chest.

Dr. Landolfo: We came up with a plan to individualize her care.

Naser M. Ammash, M.D., Cardiovascular Diseases, Mayo Clinic: If you take patients who we follow with a aneurysm in the setting of bicuspid valve, around 30% will have surgery for the aorta. Although, the risk an aortic operation is really, really low, you never know when someone is going to have a complication related to surgery.

Healther Lister: The issue with this is there are so many unknowns. And it's always a risk/reward in whether the risk of the surgery is greater than the risk of dissection.

Dr. Landolfo: In the meanwhile, Heather had gone to the emergency room, at least twice with chest pain. So we made the decision to go ahead and get her aorta repaired. Fortunately, because her valve was in such good condition, they were able to resuspend her valve without having to replace it or have any damage.

Dr. Ammash: We know how to take care of patients like her. It's from the sonographers, who did the echocardiogram and identified the dilated aorta. It was Dr. Landolfo, who visited with her initially and explained to her what the real situation is. The additional imaging of the chest, the CT scan, to look at the whole aorta, so the radiologist saw her. Then because she has a congenital heart defect, I came into the picture, because of the congenital background and expertise needed in decision-making. And then you have the medical genetics involved as well, because of the genetic basis of her abnormality. And then the surgeon, so this collaborative effort between different specialties with a focus on Heather is unique. I think we do it better than anybody else.

Heather Lister: I had surgery, and I graduated from cardiac rehab. And now I just finally feel like I'm back to who I was a couple of years ago.

I think this whole experience has given me a passion about advocating for yourself. When you know something is not right, you need to fight to be heard. When I came to Mayo, I felt like I was listened to and understood. And if someone didn't have an answer, they were going to get an answer. I think it made all the difference in the outcome.

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Contact

Arizona

  • Mayo Clinic Adult Congenital Heart Disease Clinic
  • 13400 E. Shea Blvd.
    Scottsdale, AZ 85259
  • Phone: 480-301-8484

Florida

  • Mayo Clinic Adult Congenital Heart Disease Clinic
  • 4500 San Pablo Road
    Jacksonville, FL 32224
  • Phone: 904-953-0859

Minnesota

  • Mayo Clinic Adult Congenital Heart Disease Clinic
  • 200 First St. SW
    Rochester, MN 55905
  • Phone: 507-284-3994
Jan. 17, 2024