Over the past half century many publications have documented the dramatic relief of distress and disability of children with severe congenital malformations of the heart following palliative and attempted curative surgical procedures. This sense of triumph was slowly displaced by some disappointment as in the follow-up evaluations of our patients we realized that many of the advantages gained were frequently lost through preventable adverse circumstances.
Sometimes it was the adolescent revolt of the growing child which rejected restrictions of activity and attention to minor symptoms, dental hygiene or medical follow-up. Other times it was an unfavorable progression of anatomic or physiologic alterations of the heart and circulation which required further medication or further surgery. Additionally the development of “adult” conditions, hypertension, diabetes, pregnancy, etc. needed closer medical attention and supportive care.
Then the realization came that help was needed for the successful integration of our patients into the world of work and societal responsibilities. And finally, and importantly, it had to be admitted that having a cardiac malformation poses a risk of recurrence in subsequent generations.
Prevention of disease is now increasingly emphasized on the national and international scene. It is hoped that an overview of Public Health perspectives will be helpful and stimulate multidisciplinary efforts toward the implementation of personal and public actions to fully realize the benefits of medical and surgical care for all patients with congenital heart disease.
Charlotte Ferencz, M.D. C.M. (McGill), M.P.H. (Johns Hopkins)
Professor Emeritus, Departments of Epidemiology and Preventive Medicine, and of Pediatrics University of Maryland School of Medicine