“When I woke up, I was paralyzed from the waist down.”
Fourteen year-old Langford resident Cassidy Scott, now 14, recalled swinging her legs off the bed and collapsing onto the floor. Uncertain why her limbs weren’t responding, she thought she was sick with mononucleosis, but knew immediately she needed to get to the hospital. “If I lived alone and I couldn’t get to my phone, I would have eventually went into a coma and stopped breathing.”
What she didn’t know was she was afflicted with Guillain Barré syndrome (GBS), a rare condition with symptoms ranging from weakness, tingling and numbness in the extremities, to complete paralysis. It was slowly robbing her body of its ability to function.
Starting from the top of her head, the symptoms began affecting her neck, shoulders and arms and slowly worked their way to the bottoms of her feet, hobbling her ability to walk. Her stomach stopped functioning, she stopped breathing and she eventually fell into a coma-like state. Machines syphoned food into her body and pushed air in and out of her lungs.
Dr. Allen Beck of Victoria General Hospital’s pediatric intensive care unit said the exact cause of the syndrome is unknown.
“It’s a fairly rare disorder and most people probably aren’t familiar with it,” he said. “I would see it in intensive care settings maybe five to 10 times a year. Here on the Island, probably one or two a year in children. There are possibly more cases that don’t get to intensive care intervention.”
GBS may be spurred by other illnesses, Beck said. In Cassidy’s case, a bout with mononucleosis may have caused an immune reaction, he said.
“She wasn’t able to communicate at all with us. She couldn’t move or talk; she was just in a coma,” said Scott’s mother, Lia Carle. “To see how much brain activity she had, they did a (scan) … She was basically dreaming … which is good, because it would be really difficult to not be able to move or talk, but know exactly what was happening.”
Five months pregnant with her third child, Carle stayed by Cassidy’s side at B.C. Children’s Hospital in Vancouver, where Scott had been airlifted. Other potential causes of her condition were slowly ruled out using tests that included a spinal tap, until doctors landed on GBS. There is no known test for the syndrome, except to rule out all other possibilities.
“Every time we went there she was just worse and worse. She could move her shoulder and arms and her eyes, and then the next day she couldn’t move, so it was extremely scary,” Carle said. “They said she will get better, we don’t know how (much) better she’ll get. It was really scary to see her declining and declining and then eventually in a coma.”
Every day for three months Scott was given a plasma exchange. The procedure takes blood out of the patient to separate red and white blood cells from plasma, and reintroduces the blood cells into her body with donor plasma.
“She had a response right away; she began being able to move her eyes,” Carle said. “It returns movement from the top back down. So she started being able to move her eyebrows and shrug her shoulders.”
After two weeks being completely paralyzed and unresponsive, Scott slowly regained her strength. She eventually started physiotherapy, re-learning to walk and talk. She hadn’t taken in solid food in over a month, so eating was a challenge. After being intubated for so long, she needed to re-learn how to breath without the tubes surgically implanted into her throat. Months later, she returned to heal in Langford.
“When she came back here she started school in a wheelchair … Then she had a walker, and then she had the poles and now she has splints on her legs,” Carle said, adding that the legs are last to repair themselves.
An ordeal that started in April 2015 continues, but Scott, now in Grade 8, is happy to have her health back and enjoys being active again. The words #Blessed are scribed on her hand with a marker, a personal note from one of her best friends. She admits there are still sometimes challenges, but she finds solace in a new passion: photography.
“(With a camera) I can make the world look different then it actually is,” Scott said. “It’s like seeing something from a different perspective, a different set of eyes.”
A year after facing the greatest challenge of her young life, Scott is looking at life in a completely new way.
alim@goldstreamgazette.com