The "Discovery" of Sudden Infant Death Syndrome: Lessons in the Practice of Political Medicine

The "Discovery" of Sudden Infant Death Syndrome: Lessons in the Practice of Political Medicine

The "Discovery" of Sudden Infant Death Syndrome: Lessons in the Practice of Political Medicine

The "Discovery" of Sudden Infant Death Syndrome: Lessons in the Practice of Political Medicine

Synopsis

"Historically neither the health care system nor the government knew or wanted to know about SIDS. Bergman, who has worked with parents and with a small number of professionals, was president of the National SIDS Foundation (1972-77), got SIDS research into federal programs, and provided help for bereaved parents--counselling rather than jail. . . . This book is must reading for health care providers and for government health policymakers. It should be in all libraries. Rarely does a book offer so much insight into human need and into political medicine. Highly recommended." Choice "This is a very useful book that describes the valuable contribution that a dedicated public spirited pediatrician can make to promote the health of children in the United States." JAMA

Excerpt

This is an important book. It documents the discovery of one of the most neglected diseases in child health. Sudden Infant Death Syndrome is the most important single cause of death in the first year of life after the newborn, and until the 1970s it was the most ignored disease in the United States. All this changed as a result of the dedicated and remarkable group of people, mostly parents, who had suffered through the loss of a child from this syndrome, and their dedicated medical advisor, Dr. Bergman. A major accomplishment of the 1960s and 1970s was the definition of this clinical syndrome and its separation from other causes of death in children. But the remarkable parts of this book are the graphic details of the terrible burden placed upon parents who suffered the loss of their children. Doctors did not talk to them about it. In many instances they were accused of child abuse, and were even imprisoned. A good deal of the book details the successful way in which this hardy band got through the political system to win an appropriation for the development of parent support groups. It documents, for naive enthusiasts, the many pitfalls between a good idea and its implementation. It will warn those who think they can get a bill passed and implemented, no matter how logical and good the bill may seem, that to be successful one must expend an enormous amount of time and energy, be skillful in the political process, know the right people, and deal with media. One quote from the book, in this regard, stands out: "Media attention is an absolute necessity for successful public-interest lobbying."

Equally important to the successful lobbying effort was the campaign to sensitize health professionals to care more humanely for these bereaved families. While that battle will never be completely won, there is no doubt that physicians know about Sudden Infant Death Syndrome, and they are more likely than in the past to deal effectively with the grief of these parents. Perhaps, the most important thing to me from this book is the tribute it pays to the remarkable talents of "ordinary" people who do extraordinary things when motivated for the public good.

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