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Sherman Alexie: Born with Hydrocephalus, Now a Well Known Author

SermanAlexie_Portrait

Sherman Alexie, winner of a National Book Award, has just come out with a new book of short stories called “War Dances” as reported by the New York TimesLA Times, and the Colbert Report.  NY Times called his last book, The Absolutely True Diary of a Part-Time Indian, a “commercial breakthrough.”  In this book, Alexie created a character who like himself was born with a condition called Hydrocephalus.

Born hydrocephalic, which means with water on the brain, Alexie underwent a brain operation at the age of 6 months and was not expected to survive. When he did beat the odds, doctors predicted he would live with severe mental retardation. Though he showed no signs of this, he suffered severe side effects, such as seizures, throughout his childhood. In spite of all he had to overcome, Alexie learned to read by age three, and devoured novels, such as John Steinbeck’s The Grapes of Wrath, by age fiveshermanalexie.com

Hydrocephalus is referred to as “water on the brain” but it is actually a back up of cerebrospinal fluid (CSF), a normal fluid that is made continuously by the brain. CSF provides nutrition and serves as a cushion for the brain and spinal cord. Normal pressure in the skull is regulated by release of CSF to the heart through large veins in the brain. Any number of problems including, a birth defect, a tumor, an infection, or bleeding can cause an interruption in this system and cause fluid, and therefore pressure, to build up. It is most often noticed in infants when this pressure causes the skull to enlarge. Sometimes children with this condition also have developmental delays. If left untreated, hydrocephalus can lead to death or serious brain injury. Surgeons at the Pediatric Neurosurgery Center say, “the prognosis for successful management of hydrocephalus is excellent. It is however the underlying cause that will ultimately determine a child’s outcome.”

The treatment is almost always surgical, to either fix the problem that is causing the back up of fluid or to insert a shunt to drain it off. Shunts come in a variety of types but are basically tubes that can be used to divert fluid from the brain to another part of the body where it can be absorbed.

Dr. Neil Feldstein from the Pediatric Neurosurgery Center said that surgery for this condition has come a long way since Alexie’s time. During the time when Alexie, now in his early forties, would have had his surgery, shunts were just being developed. He goes on to say, “Now, in addition to shunts we can also perform internal diversions call endoscopic third ventriculostomies (ETV) in selected cases. If they succeed the patients hydrocephalus is treated without the need for placing a permanent shunt system. In addition to the evolution of shunts in the past 40 years the practice of ETV has come a very long way due to the improvement of endoscopic instrumentation, MRI imaging and intraoperative navigation.”

“I’m fine now,” Alexie recently told the LA Times “I’m a success story.” Alexie is not only fine, he is exceptional. During his career he has published 18 volumes of fiction and poetry. According to the LA Times, “In 1996, he was named one of Granta magazine’s Best Young American Novelists; his novel ‘Reservation Blues’ was shortlisted for the prestigious international IMPAC Dublin Literary Award in 1997; in 1999, the New Yorker selected him as one of its 20 Writers for the 21st Century.”

He has also become a filmmaker. He wrote the movies Smoke Signals and The Business of Fancydancing, which he also directed. Still in production, is a documentary about hydrocephalus that he is making with the Hydrocephalus Association. The film has been tentatively titled “Learning to Drown” after a poem about hydrocephalus Alexie published in 1993. In a recent New York Times interview Alexie said that “he wants mothers to know there is hope. After all, he spent his first seven years of life in and out of hospitals with seizures” and look at him now.

patient journey

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