Three years ago, attorney Patrick B. Donohue’s infant daughter Sarah Jane was violently shaken by “the monster,” as he calls a former nurse now behind bars.
Mr. Donohue is today a single parent – amicably divorced from Sarah’s grief-plagued mother – raising a brain-damaged girl for whom he has hope far beyond what medical science now forecasts for a child unable to speak or crawl or walk under her own power, who wears splints on her hands and ankles to keep muscles from involuntarily curling her limbs, and who takes anti-seizure medication.
Mr. Donohue has employed his skills as an attorney and political operative to create the nonprofit Sarah Jane Brain Foundation and its related Web site – www.thebrainproject.org – where his daughter’s medical records are displayed and regularly updated as the genesis for a centralized database for neurologists seeking answers to the mysteries of pediatric brain t rauma as well as parents coping with questions.
To date, Mr. Donohue said, some 30 families have involved themselves in the site by likewise posting medical information about their own brain-damaged children.
“It’s a wonderful thing to use to the Internet in this way,” said Paul Dansker, who handles brain injury cases at his Manhattan firm, Dankser & Aspromonte. “The brain is such a complex organ. A lot of this [diagnosis and injury treatment] is hit or miss because individuals are very, very unique. Anything that can help doctors, parents, teachers understand is welcome.”
Although much is known about adult brain injury, comparatively little is known about pediatric damage, according to Dr. Ron Savage of the Center for Neurological and Neurodevelopmental Health in Voorhees, N.J. He said Mr. Donohue’s initiative is the nation’s first organized effort to explore the considerably more complex problem of diagnosing and treating damage to brains not yet completely formed.
Until age 23, and sometimes as late as 25, according to Dr. Savage, the human brain lacks full development in the most important area: the frontal lobes, dealing with emotion, impulse-control and decision-making.
“Think of the difference between the adult brain and the pediatric brain as a matter of electrical wiring in your house – installed versus partially there,” said Mr. Donohue, whose bipartisan Max Consulting Group has served the campaign finance committee for former Governor George E. Pataki an d other office holders.
“If there’s a short somewhere in that wiring, it’s easier to trace out when the house is completely wired. But if it’s not fully wired and you’re having problems, there’s no real mapping, no pattern to go after,” said Mr. Donohue. “As adults, we travel along a linear path, with a few little deviations we’re able to work around. With a brain-injured child, you have 500 different paths at the same time. It’s difficult [for a child] to find the way.”
Of neuroplasticity – the study of the brain’s capacity to reorganize itself, under investigation by the National Institutes of Health, among others – he added, “The science is in its infantile stages. It’s analogous to computer science in the 1950s and ’60s, back when nobody knew what anybody else was doing.”
This week, Mr. Donohue worked on details for the first national assembly of his foundation’s 23-member board of directors – a who’s who of medical professionals formed six months ago that includes Dr. Savage, along with representatives from institutions such as the University of California at Los Angeles, Tufts University of Medford, Mass., and George Washington School of Medicine in Washington, D.C. The inaugural meeting is set for Jan. 8-9 in Manhattan at a location yet to be determined.
Along with discussion of a best-practices statement for parents and doctors during the January meeting, Mr. Donohue said he expects to be talking about the welter of legal issues he and others face at “every step of the way.”
Mr. Donohue, a nonpracticing attorney who earned his law degree from Fordham University School of Law in 1997 while running his political consultancy, said legal issues begin with legislation requiring hospitals to educate parents on how to deal with “shaken-baby syndrome,” the crime affecting Sarah Jane, whose private certified nurse was convicted in Manhattan Supreme Court of second-degree assault and is serving a 10-year prison sentence.
Other legal issues, he said, include customary tort matters, health and public transportation issues, the right to adequate service from school boards, claims under the Americans with Disabilities Act and possible employment discrimination.
Also on the January agenda is a matter recently recognized as a looming crisis by the U.S. Department of Defense – young veterans returning from Iraq and Afghanistan with blast injuries to the head, which Dr. Savage described as “signature wounds” of combat on those fronts.
Like 3-year-old Sarah Jane, physically mature veterans with pediatric brains will require potentially “lifelong care running into millions of dollars each,” said Dr. Savage.
Eight months ago, Army Brigadier General Lori Sutton, a physician and psychiatrist, was appointed to a special Pentagon post to coordinate research and treatment of traumatic brain injury among returning vets.
According to Pentagon statistics, there are2016 injuries for every death among military personnel in Iraq and Afghanistan – of which nearly 35 percent are caused by blasts – compared to an injury-death ratio of 3:1 during the Vietnam era.
Once brain-injured veterans are medically treated, said Dr. Savage, “they’ll need to be able to navigate their communities” with the help of social and legal services.
“The [Veterans Administration] hospitals are wonderful, but they’re hospitals,” said Dr. Savage. “You can’t say to a hospital, ‘All right, now help this patient go get a job and live independently.’ Our veterans will need community-based programs – job training, cognitive therapy and the like. The cost will be heavy.”
Last month, Mr. Donohue’s fledgling foundation, which at present constitutes himself, organized its first fundraising dinner.
Philanthropists invited to the event at the 3 West Club in Manhattan made donations ranging from $250 to $100,000. Major supporters included Henry Buhl, a retired investment banker and founder of the Soho Partnership; Glenn Creamer, senior managing director of Providence Equity; real estate developer Leonard Litwin; and Nelson Peltz, chief executive of Triarc Companies. Mr. Donohue said he has received previous financial backing from the Allstate Foundation.
As a self-acknowledged “impatient man” when it comes to Sarah Jane – “She’ll graduate from Yale by the time the [National Institutes] study is complete” – the foundation and Web site he created in October 2007 aim to relie ve parents and physicians of having to “reinvent the wheel” for each of the 1 million children hospitalized each year due to pediatric brain injuries.
Said Dr. Savage, “Sometimes it’s not the [doctors] who make changes in the system; sometimes it’s family members. Patrick [Donohue] is amazing. Nothing holds him back.”
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