2008 Alexander S. Nadas Lecture—Repaired, Not Cured
A large number of patients with congenital cardiac disease have a repaired but not cured malformation. Although some mild cardiac defects may heal spontaneously, others persist or progress with advancing age. Among those with a major or complex defect repaired by interventional and/or surgical procedures, few are cured. Whereas major cardiac defects often occur as an isolated anomaly, many patients have serious extracardiac congenital defects, systemic syndromes, genetic abnormalities, or other handicaps. In caring for the patient, the pediatric cardiologist, in addition to directing cardiac therapy, is often called upon to coordinate the diverse care, plan, and guide for the patient’s future. It is a chronic disorder often recognized in the fetus, proceeding through infancy, childhood, and into adulthood, thus requiring long-term care. The medical and surgical therapy is usually provided by subspecialist colleagues within the field. However, delivery of appropriate, comprehensive, and optimal care requires a “quarterback” cardiologist concerned with diverse, frequently inevitable issues, such as prematurity, nutrition, growth, or genetic screening. Important concomitant problems may be related to associated extracardiac anomalies, exercise capacity, school, health or life insurance, employment, pregnancy, and family life. A primary care physician might be uncomfortable advising on many of these issues and the responsibility falls to the cardiologist. Anticipated medical advances may further impact the care and require yet greater coordination of services and close empathetic attention. These changes may include further cardiologist subspecialization, primary care provided by nurse clinicians, fetal cardiac intervention, increase in regionalization of specialty care, or more complex laboratory procedures—all not infrequently replacing the careful medical history and physical examination.