Neonatology and the Rights of Families

Bill Silverman


In Memory of Bill Silverman

By Helen Harrison

March 18, 2005

A quarter of a century ago, I had my first conversation with Bill Silverman. It was an occasion I'll never forget, for it changed my life.

I was just beginning work on a book for parents of premature babies. It was my first real writing project, and I wasn't sure it was going to go anywhere. I was the exhausted mother of two small children -- one of whom had survived an extremely premature birth with severe disabilities – and it seemed that with every visit to the pediatrician some new problem of prematurity, some new complication, was being diagnosed. As a result, I was becoming increasingly ambivalent about the topic of my book -- neonatology, and its consequences for the infant, the family and society.

My early interviews with neonatologists had, for the most part, been unsatisfying. I listened to the doctors’ triumphal statements – “more than 90% of these children are perfectly normal,” “preemies catch up by the age of two,” “don’t even bother writing about necrotizing enterocolitis or retinopathy in your book – they are problems we’ve pretty much solved,” and, my favorite, “don’t worry, these babies don’t feel pain the way you or I would.” Such statements were very much at odds with the realities we were experiencing with our son and with those of the other families I had interviewed. But perhaps, I thought, we were just exceptions, perhaps we just happened to be in the unfortunate 10% with “less than optimal” outcomes.

I was, then, awed by medical authority, and I dutifully transcribed the words of the neonatal experts. But deep down I wondered if I could ever marshal the cognitive dissonance it would take to write the sort of book that these doctors expected or would endorse. I began to despair of my project.

In the depths of my despair, however, I recalled some vague and uneasy references the professionals I’d interviewed had made to a doctor named William Silverman. Dr. Silverman was, they told me, an esteemed Professor of Pediatrics who had come to California in the 1960s but, then -- as so many others did in the late 1960s in California -- he had somehow lost his bearings. He might be OK as source on the history of neonatology, they said,… but, as for his other opinions… well... just don't go there.

These warnings piqued my interest. And so, just before deciding to throw in the towel with my project, I resolved to find and interview the mysterious and controversial Dr. Silverman.

I nerved myself up for the usual tedious and intimidating process of arranging an audience with such an august presence through intermediaries and secretaries. I prepared myself for the scheduling and rescheduling that inevitably took place with my other interviews, drawing out the process, typically, for months.

But then, on a wild hunch, I called information in Greenbrae where I understood Dr. Silverman now lived, and I learned with surprise and delight that Dr. William Silverman – this famous doctor -- actually had a listed home phone number in Greenbrae. A few moments later I discovered that he even answered his own phone!

That first conversation lasted nearly two hours. When it ended, Bill and I both knew we had found in each other kindred spirits. I also knew that my book really could be written. In two hours, Bill had validated and elaborated on my concerns, and he provided my book -- in fact, my entire subsequent life -- with a clear direction and purpose. With Bill at my side, I felt certain I could navigate the treacherous shoals of neonatal opinion and write a book that would be both honest and acceptable to at least some in the neonatal community. Thanks to Bill, The Premature Baby Book was published two years later. It's still in print. And I’m currently at work on the sequel.

Following that first momentous phone call, scarcely a day went by that Bill and I weren't in touch by phone, by mail or Internet. I have filing cabinets, book shelves and hard drives filled with our decades of correspondence and publications. Bill spent countless hours helping me with my work. He was always a careful and tactful editor, and the wisest of teachers. Although he encouraged my enthusiasms, he taught me always to keep them evidence-based. I was honored to be his student and his friend.

Some of the happiest occasions of my life have been those my husband and I shared with Bill and Ruth and with the network of like-minded parents, physicians, nurses, lawyers, ethicists, clergymen and journalists who gathered around us and joined in our efforts.

In 1992, with Bill's constant help and encouragement, members of our network came from around the world to meet in Vermont with a group of prominent neonatologists. There, we composed a document entitled "The Principles of Family-Centered Neonatal Care," or as Bill liked to call it "The Lake Champlain Manifesto." This revolutionary declaration was soon published in Pediatrics. Thanks to Bill, the issues and proposals that many of us had once been too timid to discuss were now out there for the world to see. The article has been widely endorsed and some of our proposals have been incorporated into practice at some nurseries. And though much work remains to be done, it was an important beginning.

Throughout the years, I knew Bill as a tireless, caring, and generous mentor to many parents besides myself. I watched with admiration as he empowered the downtrodden and helped the inarticulate find their voices. With his encouragement, I have seen many parents go on to publish in major lay and medical journals, speak at neonatal conferences, and take their stories to the medical profession and the public.

Bill was an inspiration and hero to thousands of parents. He was our hero because he spoke the truth about our lives and our children's lives and because he defended us with eloquence and courage.

Bill told some unpleasant truths, to be sure, and he asked uncomfortable questions. He encouraged parents to question neonatal medical authority, to speak out, and above all – to keep complaining, ("semper plangere"). As a result, some people labeled him a naysayer and a pessimist. Bill himself would frequently quote the Czech saying that "a pessimist is nothing but a well informed optimist."

However, those of us fortunate enough to be Bill’s personal friends, knew what he was really like. Bill never failed to delight us with his irreverent humor, inspire us with indefatigable energy and deep sense of purpose, and charm us with his own uniquely “well-informed” brand of optimism. He kept his energy, sense of purpose, and high spirits until the end.

On my desk at home I have a copy of a letter Bill wrote only days before he died. It was a reply to one of his critics, and it was written with all of his usual wit and elegant turn of phrase. With it is a handwritten note, penned in his familiar strong, bold, graceful script.

Bill lived fully and brilliantly until he died, and he died as he had lived, with dignity, courage, and conviction. I, and the thousands of other parents whose lives he touched, miss him deeply.

Our hearts go out to Ruth and the rest of his family. But in our shared grief, we are also profoundly grateful to have known such a great and wonderful man. We pledge to do everything within our power to celebrate Bill Silverman’s life by carrying on his important legacy.

Also available:

Commentary on the Messenger Case - Helen Harrison PDF



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