Researchers see RI stroke victim as pioneer in brain injury treatment – The Providence Journal

Maggie Worthen suffered a stroke at 22, and was seemingly in a vegetative state. But before she died in 2015, she showed more awareness than doctors thought, pointing to new treatments for brain-injured patients.

PROVIDENCE, R.I. Maggie Worthen never imagined that the title of science pioneer would be hers. A senior at Smith College, where she majored in Spanish, she hoped to become a veterinarian.

A week before graduation, the 22-year-old suffered a massive stroke.

It was 2006. Maggie now required around-the-clock care.

The location of her stroke was in the brain stem, says her mother, Nancy Worthen. She couldnt move. She couldnt speak. She couldnt communicate in any way. She looked vegetative.

A series of hospitalizations and stays at rehabilitation centers and nursing homes followed for the young woman, disabled by something so rare for someone so young. Most of the health professionals involved in her care believed that Maggie existed in a persistent vegetative state, from which she could never emerge. The state is characterized by loss of motor and cognitive function, although victims can open their eyes expressionlessly.

She looked vegetative, Nancy says. But I felt right from the beginning and others as well, her father, her boyfriend that she was responding in subtle and not-so-subtle ways. She was crying. She was laughing. She was moving her eyes. She was tracking people.

Rejecting the traditional prognosis, Nancy found the Consortium for the Advanced Study of Brain Injury, at Weill Cornell Medical College in New York City. Neuroscientist Dr. Nicholas D. Schiff enrolled Maggie in a ground-breaking research study, reported recently in Scientific American Mind.

The story In Search of Hidden Minds: Finding signs of consciousness among severely brain-injured patients is medically challenging and morally imperative enshrines Maggie as that pioneer. A stunning breakthrough is the articles description of what scientists witnessed on her initial evaluation, which was followed by years of additional tests.

Most of the doctors who treated Maggie after her stroke thought she was in the vegetative state, a condition in which peoples eyes are open, but they have no awareness of themselves, others or their surroundings, Schiff and his Scientific American co-author, Dr. Joseph J. Fins, co-director of the brain injury consortium, wrote.

But the researchers found something quite different on their first evaluation.

Nancy learned that her daughter was indeed conscious and that she knew who Nancy was, they wrote. Armed with that information, Nancy was able to get Maggie greater rehabilitative care. Mother and daughter pursued speech and art therapy, with the help of specialized computer software designed by a former Brown University researcher.

And before Maggies death in August 2015 from complications of pneumonia, Schiff and Fins wrote, she was regaining some ability to interact and had even spoken a few words something that would never have been possible had Nancy accepted the initial verdict that her daughter was in the vegetative state.

Maggie spoke for the first time since her stroke in 2012, Nancy says, at a nursing home where she was living. Nancy was not present.

One of the caregivers was getting her ready for bed, got her tucked in, got the blanket nice, her hand comfortable, and she said, Thank you, Nancy says.

On another occasion, Nancy says, a physical therapist was massaging her leg and asked the young woman if it was OK.

OK, Maggie answered.

Nancy never did hear her daughter speak directly, but she listened to a recording made by the research team during one of her many stays in a New York hospital.

She was with two nurses and they were bathing her and talking to her, which is good, and they were saying Is this water too hot? And they didnt expect her to answer but she did. She said, It's hot. That was crazy.

Following Maggies death, Nancy determined to keep her legacy alive. One way is with her fundraising support of the Coming to Rhode Island exhibit at the Providence Childrens Museum. Another is proceeds from sales of a book about mother and daughter illustrated with their paintings, The Sunflower Story: Planting Seeds of Love, which Nancy is donating to an anti-bullying program.

The medical research is another contribution, one with potentially wider results. Not only are some people with a consciousness disorder aware and able to communicate, over years some may improve as parts of their brains regenerate, contrary to the conventional wisdom that such a window typically is measured only in months.

Margaret went to New York five times, Nancy says. They were able to get many pictures of her brain, studies of the electrical charges, and they were able to discover that her brain had changed. Her speech center was becoming more active, even though she wasnt speaking, because she was stimulated by her computer work and by her painting.

That shows definitely that for someone like Margaret and there are thousands of people like her that they need that kind of stimulation which isnt funded in our healthcare system at this time. These people who dont have voices need advocates. The research shows the reason that they need this kind of help.

Schiff and Fins concluded their Scientific American Mind article with a call to arms:

Patients like Maggie need more than physiological reintegration to recover. They need social reintegration as well. Currently we segregate disabled consciousness individuals in the healthcare system, treat them as if they are not aware, and deny them the opportunity to participate in civil society.

But that opportunity is a basic human right they hold under our prevailing laws. Both the Americans with Disabilities Act and the United Nations Convention on the Rights of Persons with Disabilities assert that individuals with disability have the right to be maximally integrated.

Says Nancy: Margarets work with these scientists makes her a pioneer even though she wasnt speaking.

She was embodying something that was being discovered by her brain changing. Its amazing. I mean, its so cool.

The Sunflower Story: Planting Seeds of Love, may be purchased athttp://www.magsarts.com/

Watch a video:http://www.tout.com/m/ghz6dv

gwmiller@providencejournal.com

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On Twitter: @GWayneMiller

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Researchers see RI stroke victim as pioneer in brain injury treatment - The Providence Journal