Congenital heart disease is a term that covers a wide range of heart defects or abnormalities that are present at birth.
In some cases, the defect is severe and life threatening. It may prevent the heart from working effectively and could require complex medical care—even open-heart surgery—to correct. In other cases, the defect may go undiscovered for years, and may not substantially affect a person’s quality of life until the person is a teenager, in midlife or even older.
“One in 100 people have some form of congenital heart disease, which means it is present at birth, even though it may not be diagnosed until much later,” said University of Minnesota Health Pediatric Cardiologist Jamie Lohr, MD, who is a congenital heart disease specialist.
Fortunately, advancements in surgical and non-surgical care for congenital heart conditions are allowing children and adults with congenital heart disease to live longer, healthier lives. We asked Lohr and Cardiologist Kimara March, MD, to tell us more about the technologies and changes that are advancing congenital heart disease care.
In the past, a congenital heart disease diagnosis often meant a shorter lifespan, but in recent decades that trend has changed, thanks in part to the pioneering work of University of Minnesota innovators. In 1952, University of Minnesota surgeon C. Walton Lillehei, MD, MS, PhD, performed the world’s first successful open-heart surgery. Since then, our experts have continued to advance the field, leading to better outcomes for patients.
“There have been amazing improvements in the number of infants and children who survive to adulthood with congenital heart disease,” Lohr said.
As a result, the focus of congenital heart disease care has expanded. With survival rates greatly improving, doctors are now turning their attention to quality of life issues for their patients. This includes using newly available technology to minimize the number of operations a person with congenital heart disease might need. University of Minnesota Health experts are also conducting research on molecular and cell-based therapies that could prevent cardiac damage or heal hearts with fewer surgical procedures.
“Now that we have the ability to examine the effects of congenital heart disease at the molecular level, we are developing new treatments that target those changes,” Lohr said.
The field is also evolving in the direction of mechanical device support that helps survivors as they age. University of Minnesota Health Heart Care experts are leading the way in this area of research, particularly with ventricular assist devices (VAD). These devices help a person’s heart work better, improving quality of life or serving as a bridge to a heart transplant. New medicines are continually being developed—as well as ways to adapt adult therapies for use with younger patients.
With more congenital heart disease patients surviving into adulthood and leading longer lives, the field has adapted rapidly to address the growing needs of people with adult congenital heart disease.
“Even if we catch a congenital heart defect in childhood and successfully repair it, congenital heart disease is a condition that’s never really ‘cured’ in the traditional sense,” said Cardiologist Kimara March, MD.
Congenital heart disease can continue to affect people throughout adulthood, even those who have a relatively simple or mild condition, said March, who provides long-term care for adults with congenital heart disease.
“We try to help young adults with congenital heart disease understand that their condition needs lifelong management. Ideally, they should receive regular care from a cardiologist who specializes in congenital heart disease throughout their lives.”
University of Minnesota Health Heart Care employs three such experts: Lohr, March and Cardiologist Cindy Martin, MD. All three are board certified adult congenital heart disease specialists.
University of Minnesota Health Heart Care has developed a comprehensive care program that begins when a patient is a teenager and continues as they transition into independence and adulthood. The program helps teens and young adults take ownership of their healthcare needs, understand their medical condition, assume responsibility for their medications and transition from a pediatric cardiologist to an adult congenital cardiologist.
“I have the privilege of following patients from infancy through to adulthood, and can care for them at the time when they have their own children,” Lohr said.
Our expertise spans the entire spectrum of care, including complex care, surgical management and—if needed—a heart transplant. Our team unites specialists from pediatric cardiology, adult cardiology, cardiovascular surgery, cardiac imaging, and pediatric and adult electrophysiology. They are supported by nurses with expertise in congenital heart disease, dedicated cardiac catheterization lab teams and many other clinicians specializing in congenital heart disease care.
University of Minnesota Health Heart Care also offers expertise in the molecular and genetic side of congenital heart disease, including adult and pediatric cardiac-genetics clinics and a dedicated genetic counselor.