Kentucky Children's Hospital could be a key player in an ambitious multimillion-dollar program designed to prevent and treat one of the most pervasive killers of children: brain injury.
The Sarah Jane Brain Project will create a national network of top pediatric neurologists with the ultimate goal of creating a standard of care that can be applied at hospitals across the country.
Kentucky Children's Hospital in Lexington will be the lead coordinator for the project in the state.
The project, named for a New York girl who as a baby suffered a traumatic brain injury after being shaken by her nurse, was officially unveiled at a press conference in Washington, D.C., on Friday. Sarah Jane, who is severely disabled, turned 5 on Thursday.
The Sarah Jane Brain Project "is a much-needed innovation," said Dr. Joseph A. Iocono, director of the pediatric trauma program at Kentucky Children's Hospital and the project's leader in the Bluegrass. The most immediate and basic benefit of such a network would be compiling accurate information about the kinds of brain injuries that children suffer, he said.
"There is really no national network for kids' injuries in general," he said.
Another key benefit would be creating a standard of care that establishes what works best in treating brain injuries in children, he said.
"Brain injury is not something that we have an aspirin for," Iocono said. "The way a brain injury is treated in Kentucky could be different from the way a brain injury is treated in Pennsylvania."
But such potentially promising results come at a price. The Sarah Jane Brain Project estimates that it will need $125 million a year to operate nationally. Iocono said that's 10 times the amount of money that Kentucky doctors have tried unsuccessfully to secure to create a statewide network for trauma.
But that number doesn't faze the project's founder, Patrick Donohue, who said the foundation will secure stimulus money to finance the first year of the project.
Donohue, a non-practicing lawyer from New York who has served as campaign finance director for former New York Gov. George Pataki, said the money will come from several pots of money in the federal stimulus package. He said he has reviewed the stimulus money available and sees several areas that line up with the Sarah Jane Brain Project's key components.
After that, the money would be sought from the federal government through legislative action.
"I have talked with enough senators and congressmen and their staffs that I don't think it will be much of a stretch," said Donohue, who now works primarily as a political consultant.
Iocono said, "They have an aggressive agenda that we hope gets done." He said he would add pediatric rehabilitation staff with UK's share of the money.
Ideally, Iocono said, the hospital would be able to follow kids with brain injuries over an extended time and help them receive proper rehabilitation services.
Bari Lee Mattingly, pediatric trauma nurse coordinator for emergency and trauma services at UK HealthCare, said, "This project will help bring all of our ideas together so everybody can learn from everyone else's experience."
Last year, Kentucky Children's Hospital admitted 124 children with traumatic brain injuries. Across the country, 5,000 children die from brain injuries annually, according to the Sarah Jane Brian Project. "It's everything from falls to motor vehicle accidents, ATV accidents, bikes and, unfortunately, abuse," Mattingly said.
Delbert and Juanita Moyer of Mousie became reluctant experts in traumatic brain injuries on Feb. 14, 2008.
When their 22-month-old son, Chadwin, like most toddlers, found out how fast his legs could carry him, he was eager to move.
It took just a second for the boy to sprint away from his parents in the parking lot of Valley View Mennonite Church and onto a normally quiet country road.
He was hit by a car.
His liver lacerated and his brain swelling, Chadwin was taken to a hospital near Mousie, in Knott County, but he was soon in the care of doctors at Kentucky Children's Hospital.
The Moyers said they think the high level of care that Chadwin received helped him to make a full recovery much faster than doctors predicted. An expected stay in the intensive care of two to three weeks ended up being only one week.
"When he was laying there just so sedated," Juanita Moyer said, "he wasn't our little boy. But we prayed constantly."
Faith is what the family could offer, Delbert Moyer said. But the doctors did a thorough job of keeping them informed, and the care quickly made a difference.
Chadwin was sent to Cardinal Hill Rehabilitation Hospital in just 12 days. There he relearned to walk and talk and feed himself.
"He is our miracle child," Juanita Moyer said.
Delbert Moyer said talking about what happened to his little boy is sometimes hard, even now. But he hopes that by supporting the Sarah Jane Brain Project, he can in a small way help other families to have their own miracles.
"I'll do anything I can for them," he said.