A 3-year-old boy hit with a swing years later had behavioral problems. His tutor suggested his parents have the teenager checked for brain injury. He was right: Evidence of a 15-year-old injury was found.
Misdiagnoses and ineffective treatments have tormented parents of children with brain injuries long enough, according to the father of another victim. Telling the boy's story, Patrick Donohue of Manhattan, N.Y., says he's ready to launch a nationwide effort to prevent heartache for others.
Children's Hospital of Pittsburgh of UPMC has been selected to serve as lead center of excellence in Pennsylvania for the Sarah Jane Brain Project, a fledgling network of medical institutions, research universities, outpatient clinics and state brain injury associations dedicated to developing a national network of information on treatment, care and research for brain injuries in children and young adults.
The Sarah Jane Brain Project was founded in October 2007 by Mr. Donohue, in the name of his brain-injured daughter out of frustration over the lack of a central resource for information about pediatric brain injuries. Though Sarah Jane, severely hurt when shaken by a nurse when she was 5 days old, will turn 4 on Friday, she still cannot walk, talk, crawl or even sit up by herself.
According to the Sarah Jane Brain Project, pediatric traumatic brain injury is the leading cause of death and disability in the United States for children and young adults from birth to 25 years.
The Centers for Disease Control and Prevention said TBI results in an estimated 2,685 deaths and 37,000 hospitalizations per year for children from birth to age 14. There are 435,000 emergency department visits annually for that age group, the CDC said. Children's Hospital reported a spike of traumatic brain injuries among Pittsburgh patients in 2008.
"If you were to take one child incident and present it to the top 20 pediatric neurosurgery departments in the country, you'd have a dozen different procedures done," Mr. Donohue said. "There's been no study done, no evidence collected, to determine which has the highest degree of efficacy. ...
"[The goal] is shared knowledge. That's where all the breakthroughs are occurring. Hundreds of thousands of parents have gone through what I'm going to have to go through with Sarah. Why should I have to reinvent the wheel?"
In a latter phase of the Sarah Jane Brain Project, families also will be invited to post the medical records of their brain-injured children, which Mr. Donohue predicts will increase PTBI research geometrically.
"This is going to move the field forward 50 years in the next five years," he said. "It's going to spark 10,000 Ph.D.s around the world in this field. ... Three years from now, some Ph.D. student in Australia is going to look at these files and come up with a cure for pediatric brain tumors."
The lead centers of excellence, meanwhile, have to develop multi-phase, continuum-of-care master plans suitable for their own geographic area. Phases include prevention; acute care; the post-acute care reintegration phase; the adult transition stage; mild TBI identification, assessment and treatment; rural telehealth; and an online resource center, which will start off with the family registry of patient records.
One lead center of excellence was chosen in each state, the District of Columbia and Puerto Rico.
The network includes the Children's Institute of Pittsburgh, the Brain Injury Association of Pennsylvania, Children's Hospital of Philadelphia, and St. Christopher's Hospital in Philadelphia, said Dr. Rachel Berger, an attending physician at Children's Hospital of Pittsburgh who serves on the Sarah Jane advisory board.
Mr. Donohue said Children's Hospital of Pittsburgh has a history of collaboration.
"They were ready to hit the ground running," he said.
"The Sarah Jane Brain Project presents an exciting opportunity to improve the care for children with acquired brain injuries," Dr. Berger said. "It traditionally has been an underfunded and under-recognized issue for our nation's children."
Dr. Berger is working on a blood test that could help emergency room physicians diagnose brain injury in a patient in whom it might not otherwise be suspected. When there is pressure on the brain from injury, it causes cells to die and put out a chemical that's found in the blood.
The entire list of 52 lead centers will be announced tomorrow in Washington, D.C., where Mr. Donohue also will begin lobbying for federal funding for the Sarah Jane Brain Project. "In order to fully implement our plan, we need $125 million to fund 52 lead centers for a year."
Pohla Smith can be reached at email@example.com or 412-263-1228.