Retrolental fibroplasia (RLF), a newly recognized disorder of premature infants, was described in 1942. After 12 years of bafflement and after thousands of babies were blinded, the outbreak was related to the use of supplemental oxygen in the first days of life. Soon after the mystery was "solved," I began to collect material on the epidemic with a thought to recording a history of this incredible experience. For more than 20 years, I related the RLF story to generations of interns and medical students. They responded with glazed-eye incomprehension, much as I had reacted at their age when I was told about infantile scurvy, a disease seen rarely in the modern era. In standard textbooks of pediatrics, RLF was dismissed, in very little space, as a curio. Throughout this period, I stubbornly insisted that the outbreak deserved study because it taught valuable lessons. Moreover, our understanding of the disorder itself, in terms of basic mechanisms, was still rudimentary. I felt like an old Turk among young fogies.
As time went on I became convinced that the unpleasant memory of the most dramatic epidemic of infantile blindness in recorded history was being repressed in the collective consciousness of medicine because it was too painful to recall. A remark attributed to Sir Ernst Chain, concerning another disaster in perinatal medicine, strengthened my suspicion. While agreeing that the thalidomide tragedy was of great significance to the people affected, Chain dismissed the whole affair as a chance occurrence -- unfortunate but a random event and deserving no further attention. At the Congress of the Australian and New Zealand Association for the Advancement of Science in 1975, he was quoted as saying:
. . . the [thalidomide story is] insignificant, it [has] been exaggerated out of all proportion and people should forget it.
I submit that we are completely irresponsible if we fail to make an attempt to understand how it came about that more than 10,000 children throughout the world were blinded as the result of a relatively minor change in caretaking practice! Moreover, the RLF incident was not an isolated occurrence. It foreshadowed, only too accurately, the shape of things to come (the thalidomide incident occurred after the RLF experience). In the dark words of the dramatist David Garrick:
Prologues precede the piece-in mournful verse;
As undertakers before the hearse.
When other treatment disasters followed on the heels of the blindness epidemic, I had a depressing sense of the déjà vu: I had been there before. And I must say, the odd sensation has returned frequently in the past few years as changes are being made more often and the therapies are more powerful than ever before. The need for review of the lessons of the recent past has become, in my opinion, urgent.
In the present volume, I present an interpretive history of the rise and fall of RLF, and I recount a number of similar tragedies which occurred in the years following the blindness outbreak. This look-back provides some insights into a general problem: the knotty difficulties which arise between the time when a new treatment is proposed and the time when the innovation is accepted by physicians for everyday care. I do not propose that error can be eliminated during this process, but I will argue, in the pages which follow, that the extent of medical disasters caused by inevitable missteps can be contained.
My focus, in reviewing the record of the past, centers on two areas of concern: (1) weaknesses in methodology, i.e., wasteful strategies for problem-solving in clinical medicine; and (2) the widening disagreement about goals, which has come to separate the medical community from the community-at-large.
The nature of my concern about the first matter is seen in how the problem of RLF arose and how it was "solved." The following incident is revealing. When I finished a draft of the early history of the blindness disaster in preparation for the Day Lectures at Columbia University in 1975, 1 sent it to a leading figure in American pediatrics. In return, I received a brusque note which read, "You have an interesting story to tell, but tell it right!" One sentence in my draft had upset him. This followed an account of the first two examples of RLF in Boston and read: "From these vague beginnings a giant iatrogenic episode was to evolve." My confrere felt that listeners would conclude from my words that the RLF epidemic had been "made in Boston." (In fact, RLF was called the "Boston disease" during the early years of the epidemic.) I amended the offending sentence for the talks in New York, but I could not put this exchange out of my mind.
After some thought, I came to the conclusion that the tragedy was, indeed, "made" in Boston, in New York, in Baltimore and in other teaching and research centers throughout the world. The RLF catastrophe would not have been extensive if pediatric leaders had insisted that scientific rules of evidence must be satisfied before any new technique in management of premature infants was used in teaching centers.
Although this hindsight seems simple-minded, surprisingly, little has changed. The scientific method is still honored only with lip reverence by most leaders in present-day clinical medicine. Moreover, their actions are not lost on students and trainees who will determine future action; most have concluded that strict rules of evidence can be set aside in dealing with the assessment of a new treatment for patients.
My second area of emphasis is summed up in a recent remark by a nurse to a group of RLF-blinded young adults. In a discussion of the dilemmas which confront caretakers in present-day intensive care nurseries when oxygen must be administered to keep very small premature infants alive, she said, "When I go home after work, I find myself asking, `Am I doing it [making heroic technologic efforts] for you or for me'?" Her question should be pondered by all thoughtful citizens. There is some indication that the community-at-large is having second thoughts about medicine's headlong rush into the brave new world. And, I must add, physicians are tossing in their beds more fitfully than in the past.
My account is not addressed primarily to experienced neonatologists and perinatologists. As a result, I have made a conscious attempt to avoid innundating nonconversant readers with a flood of technical details about RLF, respiratory distress syndrome, kernicterus, etc. Some of the detail will be found in the Notes and References section for each chapter, and readers are directed to published citations for complete descriptions of evidence. (The citations are arranged alphabetically, by author, in the Bibliography section.)
Since I firmly believe that we learn from our mistakes, I have gone to great lengths to point out the errors of the past. My chronicle, therefore, is not a balanced account of the accomplishments in perinatal medicine. However, there has been no dearth of praise by others for the achievements in this new field. Most of the plaudits are well deserved. Indeed, the pediatric research establishment, suffering from severe reductions in public funds for research, has mounted public-relations-guided self-congratulatory efforts; one was entitled, "Voyages to Discovery." My tale dwells on the shipwrecks during these voyages.
The critical tone which I have adopted in this book may try the readers' patience. I do hope they will keep before them the advice of Karl Popper:
. . . if we respect truth, we must search for it by persistently searching for our errors, by indefatigable rational criticism and self-criticism.