Stories about: disability

A Manhattan Project for the brain, at age 50

Formation of the IDDRCs in the 1960s launched a Manhattan project for the brain.
Landmark federal legislation in JFK’s final days launched an explosion of neuroscience research. (PHOTO ILLUSTRATION: NANCY FLIESLER/ADOBE STOCK)

On October 30th, 2018, Boston Children’s will be marking the 50th anniversary of the founding of its Intellectual and Developmental Disabilities Research Center.

As the African-American civil rights movement was flowering in the 1960s, a less visible civil rights movement was dawning. And so was a revolution in science that may outshine that spurred by the U.S. space program.

It was a time when children with what is now called intellectual disability (ID) or developmental disability (DD) were “excused” from school and routinely abandoned to institutions. “Schools” like the Fernald Center in Massachusetts and the Willowbrook State School in New York housed thousands of residents.

Some participated in research, but not the kind you might think. At Willowbrook, children were deliberately infected with hepatitis to test a new treatment. At Fernald, they were deliberately exposed to radiation in an experiment approved by the Atomic Energy Commission. Institutional review boards did not then exist.

In 1962, President John F. Kennedy convened a panel to propose a “National Action to Combat Mental Retardation,” at the strong urging of his sister Eunice Kennedy Shriver. Three weeks before JFK’s assassination, the first legislation passed. It changed the course of history.

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A rising tide of neurologic impairment: Where’s the medical home for these children?

Many doctors feel unprepared to care for children with neurologic impairment. (Photo: Lindsey Hoshaw)

Jay Berry, MD, MPH, shown here with patient Kyler Quelch, is a pediatrician and hospitalist in the Complex Care Service at Children’s Hospital Boston. He leads the multi-institutional Complex Care Quality Improvement Research Collaborative.

As a general pediatrician, albeit one with experience in complex care, I find it extremely challenging to take care of children with neurologic impairment. A child’s nervous system can be “broken” for many reasons: a congenital brain or spinal cord malformation, severe head or neck trauma, a genetic condition or, like an increasing number of children, being born prematurely.

Most of the time, we can’t “fix” a broken nervous system. We can only try to support the body functions that are impaired as a result. Functions we take for granted: breathing, eating and digesting, moving, talking. We don’t have a lot of scientific evidence to guide us when doing this,

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