In the 1960s, the thalidomide disaster shocked the world. A sleeping pill that women took during pregnancy caused 8,000 children to be born deformed. Twenty years before, a similarly untested medical treatment administered with uncritical enthusiasm had blinded some 12,000 babies. If we had learned the lessons of that earlier catastrophe, the thalidomide tragedy might never have happened.
On St Valentine’s Day 1941, Dr Stewart Clifford, a paediatrician, called at a young rabbi’s home in the Roxbury district of Boston, making a routine visit to a baby girl born prematurely the previous November. When he examined her, he was shocked to discover that she was blind. He called in Dr Paul Chandler, an ophthalmologist, who found she had a condition he had never seen before. A grey membrane, rich in blood vessels, covered the back of the lens in both her eyes.
Later in the same week, Dr Clifford saw another baby, seven months old, with the same condition. The two babies were the forerunners of an epidemic that, over the next twelve years, would blind more than 12,000 children around the world.
Retrolental fibroplasia (RLF) had been seen only rarely before 1941, yet by 1950 was the commonest cause of infant blindness. During those nine years, more than fifty ‘causes’ of RLF had been identified, only to be discarded when no evidence could be found to sustain them. And a series of ‘cures’, including the miracle drug of the moment, cortisone, had raised hopes that were all too quickly deflated. As the epidemic spread, patterns began to emerge. RLF seemed to be linked to affluence. The outbreak in the United States had been followed by outbreaks in other developed countries – Britain, France, Sweden, Holland and Australia.
In 1951, two British doctors working in Birmingham, Mary Crosse and Phillip Jameson Evans, suggested that oxygen might be the cause. Most cases occurred in the United States, where oxygen was used freely, and the disease had appeared in Britain only with the coming of the National Health Service, when hospitals installed modern incubators. Dr Evans even detected a political evil. The coming of the welfare state had brought ‘well-intentioned but misguided change’. A return to ‘less indulgent care of the premature infant’ would prevent RLF.
Two years later, a pathologist at the Institute of Ophthalmology in London showed that young animals subjected to high oxygen levels developed changes in their eyes that could lead to RLF. By then, 7,000 of the 10,000 babies blinded by RLF had been born in the United States. American paediatricians, weary of chasing false leads, decided to set up a scientific study to determine whether the disease was linked to the oxygen that premature babies received during the first days of their lives. After a great deal of argument over the ethics of depriving some babies of what might be life-saving levels of oxygen, eighteen hospitals joined in a co-operative trial in which premature infants were allocated to a ‘routine oxygen’ group or a ‘curtailed oxygen’ group.
The trial lasted a year and the results, announced at a New York medical congress on 19 September 1954, showed that the babies in the ‘routine oxygen’ group ran a much greater risk of getting RLF than those in the ‘curtailed’ group. Premature baby units reduced the level of oxygen in incubators and the RLF epidemic came to a halt.
Twenty years later, the epidemic was largely forgotten, save by those who had been blinded by it, and medicine seemed not to have learned the lessons that it taught. One man who never forgot was William A Silverman, who at the time was professor of paediatrics at Columbia University in New York and regarded as the ‘father’ of neonatal intensive care. He spent twelve depressing years at the centre of the epidemic and, when he and his colleagues set up the eighteen-hospital study, they were accused of practising ‘experimental medicine’ and of depriving the ‘curtailed’ babies of life-saving treatment. When he retired, he joined an organisation providing services for the blind and, with the help of one of the victims, the musician Stevie Wonder, set about raising money for victims of the epidemic.
Sixty years later, Silverman was still angered by the way paediatric textbooks dismissed RLF as a curiosity. He believed it taught ‘essential lessons about medicine’. We are completely irresponsible, he said, if we don’t try to understand how 12,000 babies were blinded by a relatively minor change in paediatric practice: ‘I became convinced that the unpleasant memory of the most dramatic episode of infantile blindness in recorded history was being repressed from the collective consciousness of medicine because it was too painful to recall.’ One of Silverman’s ‘essential lessons’ was the need for clinical trials to determine the efficacy of new treatments by comparing their results with those achieved in similar patients receiving a different treatment or an inactive substance. Yet those who conduct such trials today still face the criticism Bill Silverman faced all those years ago. Many people are repelled by the idea of allocating patients randomly to treatment, despite the evidence that guessing in medicine carries horrific risks. To maim or kill with well-meaning guesswork is acceptable because it is not perceived as ‘human experimentation’, while scientific trials, carried out under controlled conditions, still draw pejorative headlines.
Bill Silverman likes to quote a notice displayed in a firework factory: ‘It is better to curse the darkness than to light the wrong candle.’