The single most common form of birth defect, congenital heart disease affects nearly one out of every 100 babies born in the United States.
Yet our ability to detect and characterize congenital (present at birth) heart disease has improved remarkably over the last 50 years. Now, doctors can get precise information about the nature and severity of the condition via ultrasound technology as well as magnetic resonance images (MRIs) and computed tomography (CT) scanning. In 2003, the neonatal service at the Cohen Children’s Medical Center of New York helped pioneer the use of pulse oximetry to screen for congenital heart malformations before a baby gets discharged from the regular newborn nursery. It is increasingly common, in fact, for clinicians to detect congenital heart disease even months before a child is born, allowing preparation for family, adequate support at the time of birth and the assurance of sufficient resources to begin treatment immediately at birth.
Treatment has also progressed exceptionally, especially since the development of the heart/lung machine in the 1950s, which increased surgeons’ ability to work inside of near the heart. This allowed treatment of upwards of 150 kinds of congenital heart disease – many of which were previously barely treatable.
In the last 25 years, innovative cardiologists have replaced many of those original surgical treatments with interventions in the cardiac catheterization laboratory that offer at least equivalent results with the added benefits of less need for blood transfusion, less pain, small or absent incisions and quicker recoveries. When cardiac surgery is necessary, it can be done and safely on younger and smaller children, allowing them to have a more normal type of heart function earlier in life.
Today, hospitals that help kids with congenital heart problems offer comprehensive children’s heart centers that assemble multidisciplinary specialists who work together on treatment. These include surgeons, anesthesiologists, intensive care unit specialists, highly specialized pediatric cardiologists, neonatologists, perinatologists and others, along with their trainees and the corresponding nursing expertise in each area. Specially created treatment environments include operating rooms and catheterization laboratories built specifically to treat congenital heart disease.
All these factors have brought about remarkably good survival for even the smallest of patients with the most complicated problems – despite the complexity of the systems of care. The result? There are now more adults with congenital heart disease than there are children with it, and new specialists are being trained to care for “ground-ups with congenital heart disease” (GUCH) patients who present their own special challenges to those who administer their care.
In a relatively short period, cardiac illnesses that were difficult to detect and even more difficult to treat have now become not only treatable and survivable in childhood but often compatible with excellent survival and quality of life as these patients move into adulthood. The final chapters on congenital heart disease remain unwritten as expectations continue to improve and astonishingly good outcomes become even more common.