When I was a premature newborn, struggling to survive in a hospital incubator, an article deep inside The Washington Post saved me from becoming blind.
The article discussed research showing that too much oxygen in an incubator could cause babies to lose their sight.
When my worried parents phoned the hospital, they were told doctors had also seen the piece and promptly adjusted the incubator’s air mixture.
What none of them knew was that the sight in my right eye had already been destroyed by what is now called retinopathy of prematurity, or ROP. Fortunately, the vision in my left eye remained intact.
That was back in 1953. Yet just a few months ago, a federal judge dismissed a lawsuit involving premature babies enrolled in a study of what incubator oxygen level is best. The infants’ parents said they weren’t fully informed of the risks to their infants.
I was stunned. In 2015, how can the oxygen level in incubators still be endangering babies?
The answer illuminates larger questions about medical research — how what seems certain at one time can prove wrong later.
In the 1940s, loss of 30,000 infants a year made infant mortality a leading cause of death.
When doctors noticed that healthy babies had more regular breathing patterns than struggling preemies did, they’d often enrich the oxygen levels in the incubators.
Around this time, a physician in Boston identified the first case of retrolental fibroplasia, or RLF, an abnormal buildup of blood vessels that can scar the retina and destroy eyesight.
By the time the post-war baby boom was in full swing, public health officials were warning of a “blindness epidemic” among preterm infants.
Still, when a Washington ophthalmologist named Arnall Patz asked the National Institutes of Health in 1950 to fund a clinical trial examining whether too much oxygen might be the culprit, he received a three-sentence dismissal. It curtly began: “There is nothing scientific about added oxygen as a possible cause of RLF.”
Patz and colleagues proceeded with their study anyway, funded by an anonymous local donor. The results were startling. Of 28 small babies getting a high concentration of oxygen, seven ended up with RLF, they reported. In the lower-dose group of 37 newborns, not a single one was harmed.
In September 1953, I was born seven weeks premature at George Washington University Hospital, a few miles from where Patz had done his study. On Oct. 23, 1953, a Post article on Patz’s research informed readers of “circumstantial, but impressive evidence” about “the blindness which strikes the infants after several weeks of incubator life.” As my parents instantly understood, I was that kind of high-risk infant.
Pediatrician William Silverman, who chronicled the history of RLF in a book and in journal articles, estimated that by 1953 about 7,000 U.S. babies had been blinded by oxygen therapy and what he called “well-meaning guesswork.”
A September 1954 presentation of the results of a larger trial dispelled all doubts about oxygen’s role in blinding babies. . The end of the disease seemed at hand.
Unfortunately, eliminating this disease wasn’t quite so simple.
If the earliest ROP researchers hadn’t investigated oxygen’s impact, their successors hadn’t looked closely enough at infant mortality. In the 1960s, researchers began discovering that reducing oxygen could also be dangerous — for every case of blindness prevented by oxygen restriction, 16 infants died.
Decades passed with no firmer guidance about how to balance the preterm baby’s survival against the risks of blindness. (Along the way, the clinical criteria changed and the disease name was changed from RLF to ROP.) Today’s newborns are born earlier, smaller and more vulnerable than ever. Those in the SUPPORT study averaged less than two pounds.
What has become clear is that in ROP, no simple answer explains everything.
“It’s not just an oxygen story,” says Graham Quinn, a pediatric ophthalmologist at Children’s Hospital of Pennsylvania.
Since the 1980s, there has been enormous progress in early diagnosis and treatment of ROP. Special instruments let doctors examine a newborn’s eyes, and cryotherapy and lasers can prune blood vessels before they do irreparable harm.
Meanwhile, investigation continues into genetic factors that may attenuate ROP’s toll.
Neonatologists, Quinn says, “walk a tightrope” between protecting brain function and preserving vision. Because much of ROP can now be treated, he adds, “I’d want to preserve brain function.”
Me, too. I survived. Lowering the oxygen level saved my sight without sacrificing my life.
Of course, I wish I had good vision in both eyes. But age and a careful reading of the ROP story leave me grateful for what I have been given.
Millenson is a health-care consultant and writer in Highland Park, Ill.
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