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Establishing Proof

In high school, he took extra courses at a junior college. After graduating, he spent a year in a program for blind students in Iowa. There, he expressed interest in auto mechanics; the state Commission for the Blind provided the tools for him to overhaul a car engine. Ultimately he graduated from Notre Dame and got a law degree from the University of Indiana.

Patricia Maurer's parents suspected she couldn't see when at 6 months she failed to start reaching for things. They took her to the Mayo Clinic in Rochester, Minn. and a doctor there diagnosed RLF. She also had a small amount of light perception in one eye.

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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She spent her entire career in public school. She didn't even learn Braille until she was 15, when she mastered it over the course of a summer with the help of a teacher. She took part in school activities in what seemed a normal way.

"As a child you really don't understand why things happen the way they do," she recalled. Of her blindness, she says: "I got to the place where I thought it was the way it was supposed to be for me. I knew I didn't want to just sit around. I knew I wasn't going to give up."

She met her future husband in the same training program where he rebuilt the car engine. She graduated from Drake University in Des Moines, where she studied special and elementary education. The couple married in 1973. They have two children, both sighted.

Jimmy Pew remembers Theodore Terry, the doctor who made him the first recorded case of RLF, "as a very kind, gentle man." Terry operated on him twice for glaucoma. Pew can see shadows in both eyes, but has no useful vision.

When Pew was about 7, his family moved to Maine. He lived in a large house outside Portland with his parents and an older brother, and eventually also with four cousins taken in after their parents were lost at sea. He learned Braille and as a child was a ham radio operator. He attended Brooks School, a boarding school north of Boston, where he was the only blind student. In his senior year, he got a guide dog, the first of six. He, too, is glad he was mainstreamed.

"My parents wanted me to go to regular schools. I think it was a good decision."

Pew also went to college, majoring in psychology at the University of Maine. He earned a doctorate from the University of Detroit and is now a clinical psychologist in San Francisco, where he moved in 1972.

First Suspicions

Arnall Patz grew up in Elberton, Ga., the grandson of Lithuanian Jews who immigrated to Baltimore. His father was a peddler who eventually put down roots in a town on his southern route.

One of seven children, Patz attended college and medical school at Emory University, both under accelerated, wartime schedules. He graduated from medical school in 1945, and after an internship at a hospital in Baltimore entered the Army. During a posting at Walter Reed Army Hospital, he decided he wanted to be an ophthalmologist. This was also the time he first heard about retrolental fibroplasias, a growing epidemic of unknown cause. When he was discharged in July 1948, he took an ophthalmology residency at Gallinger, the District's public hospital.

It was an unlikely choice for an ambitious young doctor who'd already published a paper (on several cases of a rare allergic reaction he'd seen as an intern) in the New England Journal of Medicine. But Gallinger beckoned for one reason. In the unvarnished parlance of medical training, it had "good pathology" -- an abundant and varied harvest of disease.

Working at the hospital when Patz arrived was a pediatrician, Leroy E. Hoeck. He was seven years older and in charge of the newborn nursery.

Hoeck grew up in Iowa, graduated from medical school there and practicing briefly before being called into military service. After discharge in 1946, he took a short post-graduate course in pediatrics at George Washington University's medical school. He then entered a three-year training program at Gallinger.

From a distance of more than 50 years, both men remember a signal moment that drew them irretrievably into the search for an answer to what caused RLF.

Patz's came in the summer of 1948, right after his residency began, when he visited the newborn nursery to look for babies with RLF. "I noticed in the nursing notes for the first time a single entry about oxygen. The nurse had recorded that the baby [was] 'receiving oxygen at six liters flow' [per minute]. My interest in oxygen stemmed, really, from that one nursing note."

Hoeck's also involved a single infant -- the first baby born under 1,000 grams (2.2 pounds) in Gallinger's history to survive. He was a boy, 997 grams, and Hoeck was his doctor. The baby was "a save" in medical lingo, and Hoeck was proud of his work.

"The problem was that when I happened to see him in the outpatient clinic four months later, that particular baby -- " Hoeck stops, unable to go further. He is choked with emotion. After 10 seconds of silence, he resumes. " -- he was completely blind." He takes a breath. "And that was devastating. I just felt we had to find the cause."

Hoeck began to research the possibilities, which in early 1949 still comprised a long list. He spent days in the library of the Army Medical Museum, on the mall where the Hirshhorn Museum now stands, reading articles. Eventually, he found an article from the "Staff Meetings of the Mayo Clinic" of 1940 by three doctors, one an Army captain. They had examined the effects of varying concentrations of oxygen (as might be encountered by bomber pilots) on blood vessels in the eye. They reported that after 30 minutes of breathing pure oxygen, a person's retinal arteries narrowed markedly -- an observation not previously made "to our knowledge," they wrote.

With the nudge from that article, Hoeck realized that in addition to prematurity, the one thing all the babies with RLF had in common was exposure to supplemental oxygen. Of course, they shared that with lots of babies whose sight was unimpaired, too.

Hoeck shared his suspicions with Patz, who was coming to have his own. Patz noticed that the retinal blood vessels in a premature baby on oxygen were narrowed and constricted, like the adults in the Mayo Clinic study. If the exposure to the high concentrations of oxygen was brief, the vessels returned to normal in 30 minutes or so. But in the babies who'd been in oxygen for days, the constriction seemed to persist indefinitely.

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