June 5, 2009 - Injury Free Coalition for Kids of Little Rock
LITTLE ROCK — The Injury Prevention Center at Arkansas Children’s Hospital is among 52 institutions that are part of a new initiative to standardize treatment for children with traumatic brain injuries, promote research and work to prevent future brain injuries.
It’s a nationwide effort that saw its genesis through the persistent efforts of a father seeking to improve care for his daughter. Sarah Jane Donohue suffered a traumatic brain injury, three broken ribs and two broken collarbones when her baby nurse violently shook her when she was just 5 days old.
She can’t crawl, walk or talk, but her father said she’s a happy child who smiles a lot and is making “small but slow progress.”
The goal of the National Pediatric Acquired Brain Injury Plan is to ensure all children have access to long-term, high-quality care regardless of where they live, said Patrick B. Donohue, Sarah Jane’s father and founder of The Sarah Jane Brain Foundation, whichis leading the effort.
It’s being officially launched today in celebration of Sarah Jane turning 5, Donohue said. It’s his birthday present to her.
“This is the largest collaboration project ever done for pediatric acquired brain injury,” he said. “We’re going to Washington, D.C., for the press announcement, then we’re going to have a surprise birthday cake for her at the end.”
Acquired brain injuries are those that occur after birth. They may occur as the result of events such as strokes, falls, physical abuse, or bicycle, car or recreational vehicle accidents, said Dr. Mary Aitken, the Injury Prevention Center’s medical director and professor of pediatrics at the University of Arkansas for Medical Sciences.
Such brain injuries are the leading cause of death and disability among U.S. children, according to the foundation.
In Arkansas, the initiative will lead to more comprehensive and coordinated care for children with traumatic brain injuries, Aitken said.
“For parents and families of people with a brain injury, it can often be a very intimidating and frustrating process to identify the care and to sustain it for their children,” she said.
“We really need to change the whole approach that we’ve had to traumatic brain injury.”
THE LOWS’ STORY
Merrily Low of Little Rock said there’s a definite need for more resources for Arkansas families coping with traumatic brain injury.
Her son Andrew suffered traumatic injury to his brain’s left frontal lobe at age 12 when he fell off a 56-foot cliff at a camp near Damascus. The accident was at 8:30 p.m., and it took rescuers about three hours to carry him on a blanket up the mountain, hike the 4 miles out of the woods and drive him to the nearest hospital.
Now 30, Andrew Low lives at Timber Ridge Ranch Neuro-Restorative Services in Benton, where he manages the concession shop. He walks and moves well, was in the National Honor Society in high school and has taken online courses from the University of Arkansas at Little Rock.
But he has lingering health problems. The injury stunted his growth, and he takes several medications daily. He’s had three major brain surgeries and suffered seizures for five years because of built-up scar tissue in his brain.
Merrily Low said it’s been an ongoing battle to get her son the care and services he needs. She’s grateful for modern medicine and the doctors, surgeons and others who’ve cared for Andrew, but said there are limited options for patients with traumatic brain injuries.
She’d like to see more services, better Medicare coverage and more resources for families, such as the Arkansas Disability Rights Center.
“There are a few things out there, but most people don’t know because we’re all islands unto ourselves. We’re dealing with our child because of his particular deficit. Somebody else deals with their child because of their particular deficit, and nobody knows about the other,” she said.
“We’re all just kind of out there on our own struggling. It’s kind of like swimming upstream when you don’t hardly know how to swim to begin with.”
Arkansas Children’s Injury Prevention Center, in collaboration with the hospital and the UAMS Department of Pediatrics, has been designated the state’s “Lead Center of Excellence” under the National Pediatric Acquired Brain Injury Plan.
Fifty-one other centers have been designated in each state, Washington, D.C., and Puerto Rico. Those centers are grouped into regions, with each center focusing on one of the plan’s seven key initiatives.
Arkansas is part of the project’s south-central region, along with Kansas, Louisiana, Missouri, New Mexico, Oklahoma and Texas.
Arkansas will be the regional leader focusing on preventing traumatic brain injury through efforts such as helmet-safety education and abuse prevention.
Other centers will focus on technological advances that can benefit families of brain-injured children, getting early diagnoses of mild brain injuries and giving young people with such injuriesresources to transition to adult care.
Others will emphasize increasing access to care in rural areas, and improving initial treatment and long-term medical care.
Donohue said there’s no funding yet for the initiative, but he hopes to tap several government and private agencies to get money for participating institutions before the end of the year.
Further details will arise as the effort gets under way and the state develops a master plan, Aitken said.
“This is really the beginning of a process,” she said. “They really want to look at the full spectrum of needs. We want to make sure institutions like ArkansasChildren’s Hospital are able to provide the best care for a child once a brain injury occurs and to provide rehabilitation care.
“But before an injury occurs is where we really have the greatest opportunity - when we can prevent it from happening in the first place.”