— A first-of-its-kind Web site, created by a father who chose to find hope amid tragedy, seeks to convince families affected by shaken baby syndrome to post the complete medical records of their injured children online.
If the database started by Patrick Donohue, whose infant daughter Sarah Jane was shaken by her baby sitter, grows large enough, it will be an invaluable resource for medical researchers who are just beginning to understand how the brain works — and how it may be healed.
“Most of the breakthroughs that are occurring in a lot of sciences today are in open-source, sort of ‘free’ information, like Wikipedia, [the] Linux operating system. Shared knowledge,” Donohue explained to TODAY’s Amy Robach Friday morning in New York.
“It dawned on me: If we put all of Sarah Jane’s medical records online — for the first time in medical history, in an open format — I’d have more eyeballs looking at her … If we have hundreds, thousands, tens of thousands of families doing the same thing, it becomes medically relevant.”
How little we know
Donohue has talked to many doctors, researchers and therapists. He’s read everything he can about the brain’s ability to reorganize itself — neuroplasticity. In the process, he told Robach, he learned how little is known about what the medical profession calls Pediatric Traumatic Brain Injury, or PTBI.
“The ones that know tell you that they don’t know,” Donohue said of researchers in the field. “One of the most important messages for the medical profession to be able to tell parents is that they don’t have answers. On the flip side of that, my thinking is that they only know about 5 percent to 10 percent of what they’re going to know about the brain. So to me that looks like an opportunity.”
Donohue held his daughter on his lap as he spoke. Sarah Jane sat with her head down, oblivious to the cameras and lights in the studio. At home, she laughs when tickled and cries when she’s unhappy. But she can’t chew solid food, can’t walk, can’t even crawl — not yet.
“She’s making slow but steady progress,” her father told Robach. “Every day I tell people that she’s making progress is a great day. But there’s no question she’s going to have a lifelong struggle.”
What happened to Sarah Jane
Sarah Jane was born on June 5, 2005, in New York. Her parents, Vanessa and Patrick, hired Noella Allick as a baby sitter. One morning after Allick watched the infant, Sarah Jane was lethargic and showed little interest in eating. She stopped crying.
Allick, who had two children of her own, told the parents not to worry. But after Sarah Jane didn’t improve, her parents took her to the hospital, where X-rays and an MRI revealed that both her collarbones had been broken along with several ribs. Far worse than that, 60 percent of the rear cortex of her brain was destroyed.
Under questioning, Allick, who was labeled the “monster baby sitter” by the New York tabloids, admitted that she shook the baby violently. More than a year later, Allick was sentenced to 10 years in prison for the crime.
Sarah Jane wasn’t the only victim of the tragedy. By the time Allick was tried and convicted, the Donohues’ marriage had fallen apart. The couple divorced, and Patrick Donohue took full custody of Sarah Jane and has devoted his life to her care.
Reinventing the wheel
Through talking to other parents of children with PTBI, he realized that there is no organized database on the condition.
“One of the things that occurred from my perspective, speaking to other families, is that every time this happens, we’re reinventing the wheel. Eighty to 85 percent of what families go through is the same,” he said.
“Unfortunately, it’s very random, depending on what state you live in, what locality you live in, as far as the services go. I want to focus on the 15 percent that makes each case unique.”
Hence the Web site, thebrainproject.org. Donohue started it by posting all of Sarah Jane’s medical records for anyone to peruse. Since he began the project, he has convinced several dozen other families to also post the records of their children. His goal is to have tens of thousands of families join.
The shared information can help families cope, but Donohue also wants a database that doctors and researchers can have free access to. “[There may be] a research scientist who’s deciding what area they’re going to get themselves into, and when they see there’s this pocket of data available to them free, it will draw more people into the field,” he told Robach.
Donohue harbors no illusions that his daughter will ever have a “normal” life. But he also feels certain that she will have a better life.
Sarah Jane went to sleep in his lap as he spoke. His hopes for her future are the same as every parent’s for every child: “The most that life can give her. I can’t define what she will eventually develop and how she can develop, but the maximum potential that I can.”