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Establishing Proof

Even though it was a Sunday, the Pews summoned Clifford to their Beacon Hill house. He examined the child and told the parents he suspected the boy was blind. Curiously, Clifford had just seen a similar case, the infant daughter of a rabbi. "I was shocked to find my second case within a week of my first," he later said.

The Pews insisted an eye doctor be called. With some effort, Clifford reached Theodore L. Terry, a Harvard professor of ophthalmology. He came and thought the problem might be congenital cataracts. Within a few days, however, that diagnosis was abandoned. The cause of the Pew baby's blindness was something else -- and it also appeared to be something new.

Marc Maurer  Patricia Maurer
Marc Maurer  Patricia Maurer
Marc Maurer, President of the National Federation of the Blind, with his wife Patricia. Both were born prematurely and both became blind from oxygen given to them in their first weeks of life. (Michael Williamson - The Washington Post)

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Terry wrote the case up for a medical journal, making reference to the rabbi's daughter and three other blind infants he saw soon afterward at the Massachusetts Eye and Ear Infirmary. All five babies had been born prematurely. In the American Journal of Ophthalmology in February 1942, he made a prophetic observation: "[S]ome new factor has arisen in extreme prematurity to produce such a condition."

He also personally notified about 50 specialists of his findings and asked them to look for cases. Soon, he had more, and with them a fuller picture of what was happening.

By the time blindness could be diagnosed for certain in the babies, their eyes contained a distinctly abnormal membrane in front of the retina, the eye's back wall, where the visual receptors lie. Terry believed the condition developed after birth, but somehow involved embryonic tissue. He tried to reproduce it in laboratory animals, but was unable to. He died in 1948 with 117 cases, and no answer.

Proof that retrolental fibroplasia was new, and that babies weren't born with it, came from a look-back at records at Johns Hopkins Hospital. A husband-and-wife research team, Ella and William Owens, found no cases from 1935 and 1944, but five in premature infants born after 1945. All had normal eyes at birth.

But what was causing it?

There were dozens of theories. They included high-protein diets, large doses of vitamins, blood transfusions, hormone therapy and antibiotics -- all treatments given with varying frequency to premature infants. Too much light was the other main candidate. Some of the theories were put to the test in small experiments. None panned out.

There seemed to be nothing in common with all the cases except prematurity and, ironically, good medical care. RLF wasn't a disease of incompetence, poverty or inadequate technology. Quite the opposite. Throughout the 1940s, reports of the disease trickled, and then began to flow, from Canada, Western Europe and Australia -- all places with advanced medical care and high standards of living.

Eventually oxygen made it onto the list of possible causes.

The person who put it there appears to have been an English doctor named Mary Crosse. She noticed that RLF didn't occur in Birmingham until 1948, when the National Health Service was created. Then, for the first time, many hospitals could buy American incubators and bottles of oxygen.

The use of oxygen to treat asphyxiation in a newborn was first tried in 1780. It was studied and recommended again in 1900. By the early 1940s, supplemental oxygen was standard treatment for premature infants in the best-equipped hospitals. What seems to have initiated the epidemic of RLF, however, was the development of incubators that could keep pumped-in oxygen from leaking out. Molded plastics developed during the war made postwar incubators increasingly airtight.

Crosse's observation came to the attention of an Australian pediatrician named Kate Campbell, who worked in three hospitals in Melbourne. One had incubators that could give premature babies air with two or three times the amount of oxygen in atmospheric air. The second used a less efficient way of delivering the gas. The third required patients to pay for supplementary oxygen, so it was "used with more economy," she wrote.

She looked at the records of her patients for the years 1948 through 1950 and saw a remarkable effect. At the hospital where oxygen was given most intensively, 19 percent of premature babies developed RLF. At the other two where it was used sparingly, the rate was only 7 percent. She speculated that the adjustment to the "oxygen-rich" world outside the womb was a stress that premature infants somehow couldn't adjust to.

It was a hunch that in broadest interpretation would turn out to be correct.

Side Effects

When Marc Maurer was 6 months old, his parents took him to Minneapolis for an eye operation. He had a second when he was 3. He had a third when he was 6. That's the one he remembers.

People with RLF often develop glaucoma, a condition in which the internal pressure in the eyeball rises because of problems in the circulation of fluid. Maurer had glaucoma and the surgery was intended to relieve it. It did that -- and more.

Until then, Maurer had a small bit of residual vision in his left eye. He could see large objects at a distance of 20 feet. After the surgery, that was gone. "I lost what I thought of as vision," he recalled recently, speaking in a flat, nearly emotionless voice. "It was very depressing for a kid like me."

When he returned home from the hospital, he refused to do anything but sit inside on a couch for a week. His mother eventually took him outside and forced him to go down a slide in the yard. With great protest, he did. Then she made him do it again. He got mad and decided to run away. He refused to go back inside.

It was a crucial lesson, he believes. "It got me out of the theory that blindness would stop me from doing stuff." Still, he adds, his voice heavy with memory, "I know the discouragement of becoming blind. I remember it still."

Maurer attended a school for the blind in Iowa for the first five grades. He learned Braille (as did his mother), and became an avid reader. In the fifth grade, he returned home to the town of Boone (pop. 12,000) and attended parochial school. He says now that he found no insuperable obstacles to learning what he wanted to.

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