Adult Congenital Heart Disease (Cardiology) | CU Medicine

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Adult Congenital Heart Disease

Adult Congenital Heart Disease (ACHD) is the medical specialty dedicated to the care of adults who have congenital heart defects (heart conditions that are present since birth). As medical advancements have improved the survival rates of children with heart conditions, a growing number of individuals are now reaching adulthood with ongoing heart-related needs. Adult Congenital Heart Disease specialists have expertise in managing these complex heart conditions throughout a patient's adult life, which only a few adult and pediatric cardiologists offer.

Comprehensive Care for Lifelong Heart Conditions

Adult Congenital Heart Disease specialists provide comprehensive care tailored to the unique needs of each individual. They have in-depth knowledge of various types of congenital heart defects, their potential complications, and the impact they can have on overall health. These specialists work closely with patients to develop personalized treatment plans, which may include medication management, lifestyle modifications, and, in some cases, interventions or surgeries.

Transitioning from Pediatric to Adult Care

Many individuals with congenital heart defects receive care from pediatric cardiologists during their childhood. However, as they reach adulthood, the transition to specialized adult care becomes essential. Adult Congenital Heart Disease specialists understand the specific challenges that come with this transition and are equipped to provide ongoing care, addressing the unique medical and psychosocial needs of young adult patients.

Our team ensures that adolescents and young adults understand the following important aspects of their medical care:

Understanding their heart condition, treatments they have received and potential issues that may arise over time
Understanding why specific medications are recommended, including the expected benefit and potential side effects
Understanding the need for lifelong care with a cardiologist trained in ACHD
Learning what symptoms to watch for and when to call their cardiologist
Learning about potential future heart health needs, including testing, surgeries and procedures
Understanding how lifestyle choices like exercise, alcohol, smoking and drugs can affect people with congenital heart conditions
Learning about family planning needs, including contraception, considerations for pregnancy and genetic implications
The importance of following regularly with a primary care doctor
Maintaining medical insurance/coverage
Completing an advanced directive

Genetic Assessments, Family Planning, and Ensuring Safe Pregnancies

Our program offers counseling, tests to understand risks, and guidance for conditions that may have a genetic component to them. These type of conditions can run in families. We also provide specialized care for women with heart defects, ensuring safe pregnancies and deliveries. In conjunction with our high-risk obstetrician colleagues, we provide comprehensive guidance, including contraception, family planning, pre-conception testing, fetal heart disease screening, pregnancy monitoring, and safe delivery.

Our care team's program for Adult Congenital Heart Disease provides comprehensive support to patients during their adolescent years, facilitating a smooth transition to adult care and empowering them to succeed as adults.

Multidisciplinary Care

Our multidisciplinary team consists of 7 ACHD trained physicians and 2 advanced practice providers. Additionally, we have 4 ACHD dedicated nurse coordinators, 2 ACHD dedicated social workers, 3 congenital heart surgeons, and experts in electrophysiology, interventional procedures, and cardiac imaging, all with specialized training in congenital heart disease.

One of the hallmarks of our care is regular ACHD specific multidisciplinary conferences, where our team collaborates as a group to determine the most suitable location for invasive treatments, such as surgeries or catheter-based interventions, based on each patient's unique needs, regardless of age. This approach ensures that every individual receives the best possible care and outcomes.

Long-term Follow-up and Monitoring

Regular follow-up visits and monitoring are crucial in Adult Congenital Heart Disease. These visits allow specialists to assess the heart's function, identify any potential complications or changes, and adjust the treatment plan accordingly. Adult Congenital Heart Disease specialists work closely with other healthcare professionals, such as cardiologists, cardiac surgeons, obstetricians and other specialists, to ensure comprehensive and coordinated care. While we understand the convenience of having much of ones testing close to home, many times this testing requires congenital heart expertise by those preforming and interpreting these studies. We therefore may occasionally need those with moderate and complex congenital heart disease to come to our centers in Colorado for many of these tests periodically .

Research and Advancement

The field of Adult Congenital Heart Disease is continuously evolving, thanks to ongoing research and advancements in medical technology. Researchers are exploring new treatment options, minimally-invasive procedures, and innovative therapies to improve the quality of life for adults with congenital heart defects. Patients in specialized programs like that of CU School of Medicine Faculty provider care team’s Colorado's Adult & Teen Congenital Heart Program (CATCH) program have access to cutting-edge treatments and clinical trials that offer promising outcomes and opportunities for improved long-term health.

Empowering Patients and Families

Adult Congenital Heart Disease specialists aim to empower patients and their families by providing education and guidance. They help individuals understand their heart condition, its potential implications, and the necessary steps to maintain optimal heart health. By fostering open communication, Adult Congenital Heart Disease specialists encourage patients and families to actively participate in their care decisions and lead fulfilling lives with their heart conditions.

Common types of adult congenital heart diseases

Atrial Septal Defect (ASD): This is a hole in the wall that separates the two upper chambers of the heart (atria).

Ventricular Septal Defect (VSD): This is a hole in the wall that separates the two lower chambers of the heart (ventricles).

Tetralogy of Fallot: This is a combination of several heart defects, including a ventricular septal defect, narrowing of the pulmonary artery, an overriding aorta, and right ventricular hypertrophy.

Transposition of the Great Arteries: This is a condition where the two main arteries that carry blood away from the heart, the pulmonary artery and the aorta, are switched in position.

Coarctation of the Aorta: This is a narrowing or constriction of the aorta, the main artery that carries oxygen-rich blood from the heart to the body.

Ebstein's Anomaly: This is a defect where the tricuspid valve, located between the right atrium and right ventricle, is abnormally formed.

Pulmonary Stenosis: This is a narrowing of the pulmonary valve or the pulmonary artery, which restricts blood flow from the heart to the lungs.

Eisenmenger Syndrome: This occurs when a left-to-right shunt in the heart, such as an atrial septal defect or ventricular septal defect, causes increased blood flow to the lungs, leading to irreversible pulmonary hypertension.

Double Outlet Right Ventricle: In this condition, both the aorta and the pulmonary artery arise from the right ventricle instead of their normal positions.

Marfan Syndrome: Marfan syndrome can lead to aortic root dilation or aortic dissection. It can also affect the function of the valves and heart muscle.