DISABILITIES

By Daniel J. Vance

Last week, I wrote about 38-year-old Patrick Donohue of New York City, whose daughter Sarah Jane at only five days old was physically abused by a person hired to provide care. Sarah Jane ended up with four broken ribs, broken collarbones, and a pediatric traumatic brain injury (PTBI). Police arrested the perpetrator.

Now age 4, Sarah still isn't able to speak intelligibly, or stand, walk or eat on her own.

While caring for Sarah Jane following the injury, Donohue, then a political consultant and trained lawyer, began learning that hardly any medical professionals serving patients with PTBI were aware of what other professionals were doing.

In late 2007, Donohue began the “Sarah Jane Brain Project” by putting his daughter's medical records online in a public forum. “It had never been done before,” said Donohue in a telephone interview. “We did it without any restrictions, with the idea, for example, that a researcher could examine her records and discover a correlation between them and something he'd been working on with his patients, or a video of Sarah Jane could get a response from a physical therapist suggesting different therapy. This could get more eyeballs on her case.”

Then a doctor said if Donohue could persuade hundreds of other parents to also place their PTBI child's records online, Donohue could make a difference. With all this valuable information in one accessible location, researchers could compare notes, draw correlations, and help each other toward solutions. It was important work: PTBI is the nation's leading cause of death and disability for children. It can be caused by vehicle accidents, stroke, tumors, falls, gunshots or sports injuries.

Before Donohue, no attempt had ever been made to promote best practices for treating PTBI patients. Many doctors were just doing their own thing. This particular field of medicine needed an organizer.

Enter Donohue. He has gathered a high-profile national advisory board and helped create a state-by-state network of “lead centers” covering all aspects of PTBI care. He said, “We want to develop a national PTBI plan that has a seamless, standardized, evidence-based, system of care universally accessible for all these kids, adults, and families regardless of where they live.”

He added that millions of children annually experience some form of PTBI. Donohue appears to have very big plans and the ability and drive to carry them out. For more, see thebrainproject.org.

Contact danieljvance.com [All American Foods and Blue Valley Sod made this column possible.]