Mark A. Largent - Keep Out of Reach of Children: Reyes Syndrome, Aspirin, and the Politics of Public Health

THE BLP PATHOGRAPHIES SERIES

Keep Out of Reach of Children: Reyes Syndrome, Aspirin, and the Politics of Public Health by Mark A. Largent continues the Bellevue Literary Press Pathographies series, each volume of which charts the impact of disease on human individuals and populations from the biological, historical, and cultural perspectives.

This series is dedicated to the memory of Lewis Thomas, author of several critically acclaimed books of popular science including The Lives of a Cell: Notes of a Biology Watcher and The Fragile Species. His longtime association with the New York University School of Medicine, beginning in the 1950s, influenced and inspired generations of young physicians, some of whom went on to become writers.

First published in the United States in 2015 by

Bellevue Literary Press, New York

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2015 by Mark A. Largent

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First Edition

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ebook ISBN: 978-1-934137-89-5

Dedicated with love and affection to my mom, Elizabeth Largentthank you for always being there for me

Contents

I N MARCH 1972, when I was two and half years old, I contracted Reyes syndrome. I nearly died. Years later, with tears in her eyes, my mother described to me the events of those horrible days. My father was on a business trip somewhere in the South, while she and I were visiting my grandparents in Lawrenceville, a sparsely populated town in the far northern reaches of New York State. Late on a Saturday afternoon I developed diarrhea. That evening I began violently vomiting and continued throwing up throughout the night. By sunrise I was feverish and semiconscious. My grandmother knew the name of a pediatrician who had just started practicing in Potsdam, twenty miles away. Early that Sunday morning my mother called the doctor, who met us at her office.

My motherwho had worked as a registered nurse until I was borncarried me, limp and barely conscious, into the doctors office, where she was told what she already knew: I was severely dehydrated and very ill. The pediatrician said that I had what she called a rare condition about which doctors knew little. There was nothing she could do for me. My mother had seen her fair share of hopeless cases in her years as a hospital nurse, and she remembers thinking that there was always something that could be tried. His best chance, the pediatrician said, is at the hospital in Ogdensburg. A doctor there has had some success with this illness. My uncle and aunt met us at the pediatricians office in a new Chrysler my uncle had borrowed from his fathers dealership. We raced forty miles west to Ogdensburg, where hospital emergency room staff had been alerted by a phone call from the pediatrician that we were on our way.

Dr. Bernard Musselman and two nurses met us at the emergency room door. Ill never forget him, my mother told me forty years later. Musselman had attended Hamilton College in upstate New York for two years before leaving to earn a medical degree from Queens University in Belfast, Northern Ireland. In 1958, during his senior year in medical school, he had joined the U.S. Navy, serving until 1963, and then went to work in Ogdensburg, his hometown, as a general physician. He left in 1968 to complete a two-year pediatrics fellowship at the Mayo Clinic and then returned to Ogdensburg to open his own pediatric practice. Musselman had admitting privileges at the A. Barton Hepburn Hospital, where he met us when we came racing into Ogdensburg just as church services were letting out. By then I was hallucinating and picking imaginary things out of the air.

Musselman quickly performed a venous cutdown, a minor surgical procedure that exposed the vein in my left ankle, and he inserted a line to start pumping fluids into me. That was when my mother first heard the name of the ailment that plagued me. The doctor told me that you had a very rare condition called Reye-Johnson syndrome that no one really understood or knew how to treat, she told me later. He said that there was a fifty-fifty chance that you would die. And, if you lived, there was a significant chance that you would have either brain or liver damage. Musselmans estimates of the prognosis for a child with Reye-Johnson syndromeor, Reyes syndromewere accurate, given what was known about it in the early 1970s.

It is not surprising that, despite having been a nurse throughout most of the 1960s, my mother had not heard of Reyes syndrome before my diagnosis with it in 1972. First described only nine years earlier by Dr. R. D. K. Reye, an Australian pathologist, the condition had been reported in only a handful of published cases throughout the mid-1960s. But there was little or no public knowledge of Reyes syndrome when I had it, and I was lucky that Musselman knew enough about the condition to know he must treat its symptoms as quickly as possible to give me any chance of survival. I was fortunate indeed to have been handed to a pediatrician with Musselmans rare combination of experiences: five years as a Navy doctor, which provided him with emergency training, followed by a two-year fellowship at the Mayo Clinic, one of the few places where he could have had the opportunity to learn about Reyes syndrome during the 1960s. Perhaps most importantly, Musselman knew what not to do. Throughout most of the 1960s the mortality rate from Reyes syndrome was about 80 percent, in part because physicians treated it aggressively with antibiotics, steroids, and insulin. Later research demonstrated that these early treatments were at best ineffective and at worst increased mortality rates.

Musselman ordered nurses to take blood tests every two hours and push fluids, potassium, dextrose, and glucose into me through the IV in my ankle. Despite their efforts, I grew increasingly unresponsive and fell into a coma that afternoon. My mother sat by my hospital bed through the night, and my father chartered a small private plane to fly him directly into the little Ogdensburg airport. The next day my condition stabilized. By the third day I was awake, and the IV was removed while I sipped Pedialyte and ate a sloppy joe. On the fourth day after my admission, I was released, apparently healthy and free of the brain and liver damage that half of the survivors of Reyes syndrome suffered.