Johns Hopkins All Children's Heart Institute

Adult Congenital Heart Disease Program

We provide ongoing care for adult patients with congenital heart defects.

Congenital heart disease (CHD) is the most common birth defect in the United States. Due to advances in treatment, people born with a congenital heart defect are now living well into adulthood. In the Adult Congenital Heart Disease Program at Johns Hopkins All Children’s Hospital, our cardiologists work with patients to provide a comprehensive diagnostic and treatment plan.

Our patients include young adults who are continuing their care with us as they enter adulthood, adults newly diagnosed with congenital heart disease, and adults with known CHD who benefit from being seen by a cardiologist with expertise in treating congenital issues.

We treat patients with the full range of congenital heart defects, from simple to complex. Our team is dedicated to helping our patients lead full and active lives to their greatest potential.

Why Should Adults with Congenital Heart Disease See a CHD Specialist?

Research shows that adults with CHD may have an increased risk of cardiac complications throughout their lives even if they have been repaired. Adults with CHD benefit from being monitored and/or treated by a cardiologist with expertise in this field. We know that even repaired defects can change throughout your life and this can impact your heart as well as other organ systems.

Patient education is an important part of the care we provide. We work with you to help you understand your condition and empower you to take an active role in your health care through a shared decision model of care to improve your quality of life.

Transition Care for Young Adults

We first see many of our pediatric patients when they are babies and young children, and continue to provide cardiac care for them into adulthood through our program. For adolescents with CHD our transition program works closely with them to achieve independence and confidence as they move towards adult-centered care.

This includes things like helping them fully understand their condition and treatment plan; knowing the names and dosages of all their medications; and helping them feel comfortable with asking their providers questions about any aspect of their care.

Learn more about the care transition program for teens.

Adult Congenital Heart Defects We Treat

We treat adults with all types of congenital heart defects.

Patients with CHD who are pregnant or planning to become pregnant may face increased risk of complications. Our cardiologists, fetal cardiologists and maternal-fetal medicine specialists work closely together before, during and after delivery to create a treatment plan that meets the needs of you and your unborn baby.

Some patients may only need one visit and we can help create a treatment plan with your providers, or we may provide long-term care, depending on your needs. For patients who are already being seen by an adult cardiologist, we will work closely with your local cardiologist to coordinate your care.

Conditions we treat may include:

  • Anomalous pulmonary venous return (partial and total)
  • Aortic stenosis
  • Aortopulmonary (AP) window
  • Arrhythmia
  • Atrial septal defects
  • Atrioventricular canal defect
  • Bacterial endocarditis
  • Bicuspid aortic valve
  • Coarctation of the aorta
  • Double outlet right ventricle
  • Ebstein’s anomaly
  • Fontan
  • Hypoplastic left heart syndrome
  • Patent ductus arteriosus
  • Pulmonary hypertension
  • Pulmonary stenosis
  • Single ventricle defects
  • Tetralogy of Fallot
  • Transposition of the great arteries
  • Tricuspid atresia
  • Truncus arteriosus
  • Vascular ring
  • Ventricular septal defect

What to Expect During Your Visit

During your visit you will typically have an echocardiogram, performed by a sonographer with specialized training in congenital heart disease. You will meet with a nurse or nurse practitioner who will gather initial information. You will then be seen by the cardiologist, who will examine you and discuss a treatment plan and follow-up care.

Additional testing such as MRI/CT, lab work, ultrasounds, Holter monitors, and exercise stress testing may also be ordered depending on your case. We will work closely with you in scheduling and coordinating these tests. Some outpatient procedures may be performed at Johns Hopkins All Children’s while others may be performed at area hospitals, depending on the procedure required and each patient’s condition and needs.

Locations

We see patients primarily in St. Petersburg and Tampa at the following locations:

St. Petersburg:
Johns Hopkins All Children's Outpatient Care Center
601 5th St. S, St. Petersburg, FL 33701

Tampa:
Johns Hopkins All Children’s Outpatient Care, Tampa
12220 Bruce B Downs Blvd., Tampa, FL 33612

Some services may also be available at some of our other Outpatient Care locations, and we also provide options for telemedicine. Our team will work with you to determine the options best suited to your needs.

Contact Us to Make an Appointment

When you make a new patient appointment with us, a member of our team will first review your medical history and ask general questions about your cardiac history.

Medical records (including surgical and clinical notes, and prior echocardiogram, cardiac catheterization, cardiac MRI or CT records) may be sent via fax to 727-767-8990.

For more information or to make an appointment, please call 727-767-3333.