Congenital Heart Disease

The adult congenital heart disease team at The University of Kansas Health System offers comprehensive care for adults with congenital heart disease, including those who had corrective surgeries in childhood for congenital heart defects and those whose defects were first diagnosed as adults.

Many adults who received treatment for congenital heart defects as children do not receive the long-term follow-up care they need. Even after congenital heart defects are repaired, people can develop problems or complications as adults. The dedicated adult congenital heart disease (ACHD) team includes board-certified ACHD cardiologists, who subspecialize in and treat only people with ACHD.

Congenital heart disease is a heart defect that is present at birth. Almost 1 in 100 babies is born with a heart defect. Because of advances in medical and surgical care, most people born with congenital heart disease now survive into childhood.

Patients with ACHD continue to need care throughout their lives. They are best treated by a board-certified ACHD cardiologist who understands their complex and unique needs. The University of Kansas Health System’s adult congenital heart disease program makes a lifelong commitment to its patients with ACHD. In partnership with Children’s Mercy Hospital, we offer a full scope of inpatient and outpatient services to people with congenital heart disease, including helping young adult patients make the transition to ACHD care.

Congenital heart disease can take many forms, from simple to complex. Some of the most common types of congenital heart disease include:

People with adult congenital heart disease can experience a broad variety of symptoms associated with their condition. Many patients have no symptoms at all, but still need to be seen regularly by an ACHD cardiologist.

Possible ACHD symptoms may include:

• Chest pain
• Cyanosis (blueish coloring of the skin, lips and fingernails)
• Dizziness or passing out
• Heart palpitations
• Intolerance of activity or exercise
• Shortness of breath

As well as being aware of any symptoms they might experience, people with ACHD may also be at elevated risk for complications, including:

• Anxiety, depression and other mental health concerns
• Blood clots or strokes
• Cardiac arrhythmias
• Heart failure
• Infections in the heart
• Valve problems

The University of Kansas Health System offers comprehensive cardiac diagnostic tools that can be used to identify and evaluate congenital heart problems. Available screening tools include:

• Cardiac MRI uses magnetic resonance imaging to create detailed visuals of the heart and surrounding arteries and vessels.
• Cardiac CT scan visualizes the heart valves and arteries.
• Cardiac catheterization is a minimally invasive procedure in which pressures are measured and pictures are taken in the heart, lungs and blood vessels and can often be used to treat certain problems without the need for open heart surgery.
• Echocardiogram is a noninvasive technique that uses ultrasound to examine the structure of the heart and evaluate its capacity to pump blood.
• Electrocardiogram (ECG or EKG) is a test that records the electrical activity of the heart.
• Exercise stress test measures the function of the heart during exercise.
• Heart rhythm monitors assess whether the heart is experiencing arrhythmias. You wear the monitor for a prescribed period of time, then your ACHD care team reviews the data collected from the monitor.

Some people can go without treatment for their congenital heart disease symptoms and live their lives with no long-term effects to their heart health. Others with more serious conditions may need one or more treatment options right away:

• Artificial heart valves
• Heart pacing devices or heart rhythm procedures
• Heart surgery, including robotic and minimally invasive procedures
• Heart transplantation
• Medications
• Transcatheter treatment of atrial septal defect, ventricular septal defect and others
• Transcatheter valve procedures

Our adult congenital heart disease care team coordinates care based on the needs of each individual using evidence-based practices. In addition, we offer the following programs specific to people with ACHD:

• Transition of care. The University of Kansas Health System partners with Children’s Mercy Hospital to ensure patients comfortably make the transition from pediatric care to adult care.
• Single ventricle/Fontan surveillance. This program provides ongoing monitoring so potential complications can be addressed before they come up. We collaborate with a multidisciplinary team that includes a liver specialist to ensure our patients receive the most advanced, integrated and comprehensive care.
• Dedicated cardiovascular genetic counseling. Our expert genetic counselors work closely with patients and their families to help them make informed decisions about their health and provide support for managing hereditary risk.
• ACHD/electrophysiology. Our ACHD/electrophysiology program offers combined visits with an ACHD cardiologist and an ACHD-focused electrophysiologist for our patients with complex heart rhythm needs.
• Pulmonary valve care. We offer leading-edge surgical and transcatheter pulmonary valve replacement techniques, so you can feel confident you’re getting the best option for you.
• Cardio-obstetrics clinic. We offer collaborative care with your ACHD cardiologist and maternal fetal medicine specialists in a dedicated clinic.
• Advanced heart failure/transplant. Our ACHD team works closely with The University of Kansas Health System’s heart failure and heart transplant team to care for ACHD patients who need advanced heart failure therapies and/or transplant.
• Pulmonary hypertension. Our ACHD cardiologists and pulmonary hypertension specialists collaborate to provide optimal care for high pressure in the arteries in the lungs, a problem often associated with ACHD.
• Adolescent and young adult palliative care. We have a dedicated palliative care team for young adult patients who are living with congenital heart disease.
• Adults with Down syndrome program. We collaborate with our Down syndrome program to provide dedicated care to patients with Down syndrome who also have ACHD.

Because we’re part of an academic medical center, you’ll benefit from a dedicated team of experts. Your care team may include:

• Board-certified ACHD cardiologists
• Cardiothoracic surgeons
• Electrophysiologists
• Genetic counselors
• Nurse navigator
• Nurse practitioner
• Palliative care specialists
• Pulmonary specialists