“I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of liquid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. the side effects--crippling headaches, dizziness, seizures, vomiting--lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s.[Thanks to the folks at Goodreads for putting up the quote. I'd already returned my copy of the book to the library and needed the passage, although I had to correct some typos.]
"There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients or their parents. Bases on the number of patients listed in the pneumoencephalography studyand the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital including Elsie. The same is likely true of at least one other study called "The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy," which involved inserting metal probes into patients' brains.”
Elsie Lacks, the oldest daughter of Henrietta and David Lacks, died at age 15 in 1955 at the Crownsville, originally known as the 'Hospital for the Negro Insane'. Elsie was diagnosed with mental retardation, epilepsy, and cerebral palsy, although she may have inherited the family trait for deafness. It's hard to tell what her exact diagnosis should have been. Children at the time were often misdiagnosed and locked away in institutions rather than receiving help. Skloot's description of conditions at Crownsville are chilling, and a photograph provides a window into how Elsie was treated, although there is a lot of room left to the imagination of the reader for just how bad it was.