Adult Congenital Heart Disease

Written by John Steuter, MD

Congenital heart defects are the most prevalent type of birth defect. In children born with a heart defect, 1 in 4 are considered a critical case that require surgery or procedures within their first year of life. 

Adult Congenital Heart Disease (ACHD): What is it?

In the 1960’s children with a Congenital Heart Defect or Disease (CHD) had roughly 15% chance of surviving to adulthood. With advancements in technology and treatment, children nowadays facing the same diagnosis of CHD are looking at 85-90% survival rate of living to adulthood. This increased survival rate is leading to a growing prevalence of Adult Congenital Heart Disease (ACHD). According to the CDC, it is estimated that more than 2 million individuals in the United States are living with ACHD. This equates to roughly 1 in 150 adults having some form of CHD. 

The most common CHDs affecting adults today are:

• Anomalous Pulmonary Veins
• Atrial and ventricular septal defects
• Coarctation of the Aorta (CoA)
• Congenital valve defects
• Ebstein Anomaly
• Patent Ductus Arteriosus
• Patent Foramen Ovale (PFO)
• Pulmonary Artery Stenosis
• Pulmonary Hypertension
• Tetralogy of Fallot (TOF)
• Transposition of the Great Arteries (TGA)

Living with a Congenital Heart Defect

CHD patients are not rid of the disease even after successful childhood treatment. The vast majority of patients with ACHD will have sequelea from their initial CHD, surgical repair or various treatments.  The ramifications of these previous actions may take years and/or decades to manifest. [i]   

The severity of CHD within this patient group is determined by innate anatomy, surgical repair/procedures performed and current physiology. CHD patients typically have better outcomes when cared for by a multidisciplinary team of specialists.[ii]  Specialty care is essential to address situations that are more complicated in ACHD patients such as exercise capacity, pregnancy, acquired cardiovascular disease and acute noncardiac illness complicating CHD.

A Continuum of Care

Primary care physicians and providers caring for ACHD patients play an important role in the team approach to care as they oversee the transition for adolescents and young adult patients from their initial pediatric cardiac specialist to an adult cardiac specialists. Continuing the conversations with your patients on the need for lifelong specialized care is essential for them living longer, healthier lives. 

Adult Congenital Heart Clinic: A Strong Partnership Close to Home

Bryan Heart is excited to be partnering with Nebraska Medicine and Children’s Hospital and Medical Center for collaboration on an Adult Congenital Heart Clinic that will be offered in Lincoln, starting in the near future. 

For any questions regarding your patients’ cardiovascular care or if you’d like to refer a patient, please call 402-483-3333.