Adult Congenital Heart Disease – Common Questions and Answers
Congenital heart disease (CHD) is the most common birth defect in the United States, occurring in one of every 110 births. Due to medical breakthroughs and progress in treatment, patients with CHD are reaching adulthood and living longer. Currently, there are more than one million adults in the United States living with this disease, and this number continues to rise by approximately 5 percent each year. At least 10 percent of all congenital heart defects are first detected in adulthood. Furthermore, patient with CHD treated in childhood, often have long-term sequelae that require regular monitoring especially throughout adulthood.
Adolescents and adults with CHD face unique challenges; some of the most common problems among adults include valvular dysfunction, ventricular dysfunction, and arrhythmias. In addition, research has shown that the risk of sudden cardiac death for patients surviving operation is 25 to 100 times greater in an adult with CHD compared with a typical adult. 1 Therefore, an aggressive approach to evaluation and treatment is necessary. This requires a coordinated team approach that includes an initial evaluation, explanation of therapeutic options, innovative transcatheter and surgical therapies and consultative follow-up.
The 2018 American College of Cardiology/American Heart Association Task Force on Practice Guidelines recommend that all patients with adult congenital heart disease (ACHD) have a primary physician and that they be evaluated by a specialist cardiologist with advanced training and expertise in ACHD. Frequency of follow-up is based on the patient's condition. In addition, patients who require interventional and/or surgical cardiovascular procedures are best served at centers with a specialized multidisciplinary adult congenital heart center. 2
Cleveland Clinic's Adult Congenital Heart Disease Center, directed by Joanna Ghobrial, MD, MS, uses a multidisciplinary team approach to deal with issues specific to adolescent and adult patients with congenital heart disease (CHD). The team includes surgeons and cardiologists who specialize in both pediatric and adult CHD, anesthesiologists, nurse practitioners, internists, geneticists, dentists, obstetricians and gynecologists, psychiatrists, radiologists, cardiac rehabilitation, and physical and occupational therapists. Cleveland Clinic's Adult Congenital Heart Disease Center combines cutting-edge technology with compassion and a family-centered approach to congenital heart care.
Cleveland Clinic's Adult Congenital Heart Disease Center has been accredited by the Adult Congenital Heart Association.
Dr. Ghobrial and Dr. Pettersson, directors of the Adult Congenital Heart Disease Center, answer questions about anomalous coronary arteries.
The Adult Congenital Heart Disease Center brings together clinicians that specialize in adult congenital heart disease. The team includes physicians, and nurses from Cardiovascular Medicine, Pediatric Cardiology, Pediatric and Congenital Heart Surgery, Cardiothoracic Surgery, Diagnostic Radiology, Pulmonary, Hepatology, Obstetrics, Genetics, Psychiatry, Critical Care Medicine, and the Transplantation Center. These individuals possess expertise in either genetic and diagnostic testing, medical management or surgical and interventional procedures for patients with all types of congenital heart conditions. Some are listed below:
Cleveland Clinic's Adult Congenital Heart Disease Center is directed by Joanna Ghobrial, MD, MSc, and uses a multidisciplinary team approach to deal with issues specific to adolescent and adult patients with congenital heart disease (CHD). The team includes surgeons and cardiologists who specialize in both pediatric and adult CHD, anesthesiologists, nurse practitioners, internists, geneticists, dentists, obstetricians and gynecologists, psychiatrists, radiologists, cardiac rehabilitation, and physical and occupational therapists. Cleveland Clinic's Adult Congenital Heart Disease Center combines cutting-edge technology with compassion and a family-centered approach to congenital heart care.
Our cardiologists and cardiac surgeons are world-renowned leaders in the treatment of CHD. Each year, they see about 1,300 patients and perform more than 350 surgeries with outcomes among the best in the nation.
Our team of pediatric and adult cardiologists, electrophysiologists, cardiothoracic surgeons and intensive-care experts specialize in:
A full range of imaging techniques and diagnostic studies designed to diagnose congenital heart defects.
Interventional catheter based procedures to treat defects of the heart and electrophysiology abnormalities.
Surgical procedures including congenital heart surgery and cardiac transplantation to treat complex congenital conditions.
To make an appointment, please call toll-free 800.659.7822 Cardiology Appointments or Request an Appointment online.
Directions
When you make your appointment, ask the administrative assistant for the name of your physician and desk number. You will be told to go to Desk J2 - 4 or Desk M41, 9500 Euclid Avenue, Cleveland, OH.
Whether you are coming from around the corner or around the world, you want to know what to expect before, during and after your visit with us. If you have any questions while reviewing this information, please contact us. We are happy to answer any questions you may have.
Before your appointment
If you are scheduled at least one week away, you will be asked to send in your records, including medical history, test results and films (such as echocardiogram, ultrasound, chest x-ray, MRI or CT as applicable). All information should be sent in the same package (clearly marked with your name and address) via Airborne Express, Federal Express, or certified U.S. mail (make sure you have a tracking number) to the physician you have scheduled the appointment with. The address to mail your records is:
A nurse or nurse practitioner will contact you prior to your arrival at Cleveland Clinic to make sure your visit is fully coordinated.
After you check in at J2 - 4, you will first be seen by a specialty trained fellow, medical resident, medical student, nurse practitioner or physician's assistant, who will review your information and begin the documentation process.
Additional testing may be required to look at your cardiac anatomy and function of your heart and other organs.
You will then meet with your ACHD physician who will review your records and take a medical history, perform a physical exam, and advise on consultations with other specialists within the Center as needed. If you need to meet with one of the multidisciplinary specialists, you will see the specialist within 1 to 2 days. Your ACHD physician will provide you with a diagnosis and plan of care.
Specialists from the Center for Personalized Genetic Health are also available to evaluate family members who are at risk for genetic or hereditary conditions.
How long will you need to stay at Cleveland Clinic?
To complete all testing, you will need to stay in the Cleveland area for 1 to 3 days.
After your visit
Most follow-up visits will be done in 6 months to 1 year or as needed. There is an opportunity for telephone follow-up as well.
Cleveland Clinic Heart, Vascular & Thoracic Institute physicians, surgeons, and researchers continue to research into new treatments and therapies with the goal of improving patient care and outcomes into the future.
Current Research Studies include:
Anomalous Coronary Study
Congenital TAVR Study
Transcatheter Pulmonary and Tricuspid Valve replacement
Clinical trials (or research studies) help us create the medicine of tomorrow. They provide hope through offering testing of new drugs, new surgical techniques or other treatments before they are widely available.
We can help you access hundreds of clinical trials across all specialty areas. Our new searchable online trials tool makes identifying treatment opportunities easier than ever.
World class heart surgery at Cleveland Clinic is provided by the Cleveland Clinic Congenital Heart Surgery team. Children and adults born with heart disease receive state-of-the-art diagnosis and treatment close to home through our northern Ohio congenital heart surgical, quality and research collaborative that includes Akron Children’s Hospital, Cleveland Clinic, Cleveland Clinic Children’s.
World class care for adults with congenital heart disease at Cleveland Clinic is provided in collaboration with the Cleveland Clinic, Cleveland Clinic Children's and Akron Children's Congenital Heart teams. Adults born with heart disease receive state-of-the-art diagnosis and treatment through our northern Ohio congenital heart surgical, quality and research collaborative that includes Akron Children's Hospital, Cleveland Clinic and Cleveland Clinic Children's.
