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Jane Gillett was on the forefront of brain injury treatment

Jane Gillett was known as a caring doctor, who worked closely with patients' families.

Jane Gillett did not like to take no for an answer. Instead, she dedicated herself to finding ways around obstacles.

As one example, as related by her colleague Ann Bedard, she was working with a sullen teenaged girl and her mother in her office in London, Ont. The girl did not want to be there and was in denial that she had suffered a brain injury from a skating accident and needed to see a neurologist. The teen was experiencing dizziness, so Gillett tested her sodium levels. "They're very low," she said. Then she wrote a prescription: one small bag of potato chips every day for 10 days. She handed it to the girl. A few minutes later she wrote another prescription, this time for six massages.

"You're the coolest doctor ever," the patient said. And then she began to speak honestly about her symptoms. Before the appointment ended, the doctor had sketched out a treatment plan that included a team of rehabilitation therapists and a visit to the girl's school to check out strategies. Now they were getting somewhere.

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Gillett was the medical director of the Acquired Brain Injury Program at Hamilton Health Sciences and an associate professor at McMaster University. She was founder and president of the International Pediatric Brain Injury Society and developed the Pediatric Acquired Brain Injury Community Outreach Program in London.

Typically, Gillett met most of her new patients in an emergency room, or an the ICU. Her job was to put in place whatever was necessary to get the person back home and make his or her life work as well as possible.

If a patient had no money and no drug plan, she would pay for necessary medications. She once persuaded an airline to fly a 19-year-old woman with severe brain trauma back to Newfoundland, and to supports she had set up for her there - but only after first convincing the airline to bring the woman's parents to Ontario to fetch her.

Gillett died on Feb. 16 in Brantford, Ont., from endometrial cancer. She was 55.

"My biggest tragedy in Jane's death was not with her passing, although she was one of my best friends," said Shayne Ladak, a physician specializing in sports concussions. "The biggest loss is for the people with acquired brain injury who will never have her care."

Jane Gillett was born on July 6, 1955, in Toronto. Her parents, Ruth and Jack Gillett, were both high school history teachers. Jane was a rascally little girl who never stopped pestering her parents with questions and was prone to stomping her feet in irritation when their answers weren't good enough.

Even in the hospice last month as she was dying, she resisted her mother's authority. Wishing to make her daughter more comfortable, Ruth said: "Jane, this is your mother speaking. I want you to lie down."

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"Mother, this is your daughter speaking," Jane responded. "No!"

She always refused to surrender when it came to helping others, said her sister, Martha Pettit. As a child, Jane's piggybank savings went toward keeping a family cat alive as long as possible. And in high school, at Northern Secondary Collegiate, she worked on fundraising events at Massey Hall for what was then called the Ontario Crippled Children's Fund.

"The blueprint of her character and the architecture of her behaviour were in place from her earliest days," said her lifelong friend Morry Patt.

Gillett graduated from the University of Toronto with a bachelor of science degree in 1977 with a gold medal for high scores.

She followed this with a master's in speech pathology from the University of Toronto and soon founded the Aphasia Centre in North York, working with people affected by stroke, traumatic brain injury or neurological diseases.

In 1984, she graduated from U of T medical school, and four years later became a certified neurologist for children and adults. Her first position was as medical director at the Children's Hospital of Western Ontario, working for the Pediatric Acquired Brain Injury Program. She remained there for 12 years, achieving much.

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She founded the Pediatric Acquired Brain Injury Community Outreach Program, an innovative care program that became an international prototype and marked her as a maverick.

"She was often questioned by other neurologists because she didn't really practice traditional neurology," Ladak said. "Instead, she looked at the big picture and where these patients would be in six months, one year, five years down the road."

Gillett and her team worked closely with teachers, parents, other caregivers and the patients themselves.

For example, she wouldn't change medication for a condition such as spasticity until she talked to a patient's occupational therapist. And she worked directly with speech pathologists around issues related to eating or swallowing. When she attended international neurology conferences, she'd insist on team members accompanying her.

Gillett followed three tenets when designing a pediatric care program. First, it has to be based in the patient's community. Second, it has to be child and family centred. Third, it has to optimize the use of local resources. For instance, children from a native or Mennonite community would have treatment plans tailored to their circumstances.

Gillett was a media spokesperson on concussions long before they began to grab headlines. Interviewed on CBC about the death of actor Natasha Richardson after a fall on the Quebec ski hill two years ago, she emphasized the importance of wearing helmets and insisted that a concussion is a brain injury that needs immediate treatment.

"My practice is in sports concussions, and Jane was the one who inspired me to do that," said Ladak. "She was chair of the Knowledge Mobilization Committee of the Trauma Foundation and one of her primary goals was to teach educators, to teach parents, to teach coaches about proper safety gear for children and young adults."

She also stressed that the human brain doesn't reach maturity until the age of 25. An important bit of information, perhaps, for a parent communicating with an overzealous 18-year-old rugby player.

Ladak and Gillett were advisory board members for the Sarah Jane Brain Foundation in New York, a non-profit organization dedicated to care systems for children with acquired brain injuries.

"On the last night of the founding conference [in 2007]most of the Americans went to catch Broadway shows while Jane and I stayed behind to draw up the guidelines," he said. "We drafted the first letter President Obama received after his inauguration, on behalf of the Sarah Jane Brain Foundation."

Gillett left London in 2001 and moved to Hamilton, where she became director of the provincial Acquired Brain Injury Program at Hamilton Heath Sciences, working specifically with slow-to-recover patients - those in non-responsive or "locked in" states. It was one of her first steps outside of pediatrics.

Esther McEvoy was a health professional working alongside Gillett in the six-bed unit. "She would bring patients onto our program in hopes we could wake them up a bit. … Maybe we could get a 'yes' or a 'no' and if we did, they could try to make some choices for themselves. It might be something as simple as asking them: 'Do you want to wear your black pants or your red pants?' "

Success in the program was measured by things such as patients moving on to a higher-level brain injury program. "They just needed a good medical workout and the time to do that," McEvoy said.

In 2009, Gillett co-founded the International Pediatric Brain Injury Society. The impact of her work stretched as far as Denmark, Sweden, Italy, Portugal, Australia, and the United States. She was working on a project in Canada's North when she became sick less than three months ago.

At one conference in New York, said Ladak, there were vociferous arguments across the table among neurosurgeons, neurologists and psychiatrists. Gillett mediated.

"She said: 'You know what? This is what it is to be Canadian. This is what we do in the world: We mediate, we keep the peace, and that's exactly what I'm doing here."

Gillette leaves her parents, Jack and Ruth Gillett, her sister Martha Pettit and her brother, Tom Gillett, as well as several nieces and nephews. She also leaves Jessica Johnson, whom she regarded as a daughter.

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