When childhood heart conditions become adult heart disease
Early diagnosis, ongoing care and lifelong monitoring are critical for supporting individuals born with congenital conditions. Among the most complex and often misunderstood of such conditions are congenital heart defects, which can carry implications far beyond childhood.
Thanks to advances in pediatric cardiology and cardiac surgery, more than 90% of children born with congenital heart disease now survive into adulthood. Survival, however, is only the beginning. Many of these patients face long-term cardiovascular challenges that require specialized adult care.
“Congenital heart defects do not disappear when a patient turns 18,” said Dr. Vicente Orozco-Sevilla, Baylor Medicine cardiothoracic surgeon. “The anatomy may have been repaired, but the heart still carries the lifelong effects of abnormal blood flow, surgical scars and altered physiology.”
From birth defect to adult heart disease
Congenital heart defects range from minor structural abnormalities to complex malformations affecting valves, chambers or major blood vessels. Even when corrected early, these defects can increase the risk of arrhythmias, heart failure, valve dysfunction and pulmonary hypertension later in life.
Some patients develop symptoms decades after their initial surgery. Others may feel well for years before subtle changes emerge, often detected only through specialized imaging or advanced cardiac testing.
“Adult patients with congenital heart disease are not the same as adults who develop heart disease later in life,” said Dr. Anna Xue, Baylor Medicine cardiothoracic surgeon. “Their hearts have adapted to unique conditions since birth and treating them requires a deep understanding of both congenital anatomy and adult cardiovascular disease.”
The importance of lifelong, specialized care
Many people born with heart defects are lost to follow-up after childhood, assuming they no longer need specialized care. This gap can delay diagnosis of progressive complications that are best managed early.
“Routine monitoring can be the difference between a manageable condition and a life-threatening event,” said Dr. Marc Moon, Baylor Medicine cardiothoracic surgeon. “We often see patients return to care only after symptoms worsen, when earlier intervention could have changed the outcome.”
Specialized adult congenital heart programs bring together cardiologists, cardiac surgeons, imaging specialists and anesthesiologists trained to manage the complex needs of these patients. Care may include pregnancy counseling, repeat interventions and advanced surgical treatment.
Awareness that spans a lifetime
“As clinicians, our responsibility does not end when a child leaves pediatric care,” Orozco-Sevilla said. “It continues across adulthood, ensuring patients receive the expertise they need at every stage of life.”
Through research, education and multidisciplinary care, Baylor College of Medicine physicians continue to advance understanding of congenital heart disease and heart surgery, for the growing population of adults living with these conditions.
By Brittany Fisk Adiletta with the Michael E. DeBakey Department of Surgery
