EDMONTON — Kamryn Bond sometimes peers at her right arm with a puzzled look.
Where did her hand go? Where are her feet, her chubby toes, the bottoms of the legs she was just learning to stand on?
The one-year-old has only a thumb, half an index finger and pinky remaining on her left hand to pick up Cheerios and Fruit Loops one at a time, popping them into her mouth with a mischievous grin.
Kammie, as her family calls her, will spend the next few months in Edmonton, learning to use double prostheses at the Glenrose Rehabilitation Hospital in place of her own legs, amputated after a rare battle with respiratory syncytial virus (RSV), bacterial pneumonia and invasive Streptococcus A.
Her new life without limbs began in February, when her mother and two brothers brought her to the Grande Prairie hospital emergency because Kamryn had a high fever and was having difficulty breathing.
“I thought we would have a quick visit to the hospital and then on to grandma and grandpa’s for supper,” says Dale Bond, Kamryn’s mother. Kammie, like her two older brothers, had previously had bouts of asthma, but was otherwise a healthy, happy baby.
But over the next few days, no amount of medication brought Kamryn’s fever down or soothed a cough that left her wincing in pain.
Dale soon noticed the skin on her daughter’s legs was mottled and splotchy. Her blood pressure spiked to 200 over 81. Her heart rate rose to 225 beats per minute. One medication caused her blood pressure to plummet, and she turned white, went limp and was rushed to a resuscitation room.
By the time she arrived in Edmonton via air ambulance, her left lung had collapsed and her body had swollen up like a ball, filled with fluid and toxic blood. She was eventually diagnosed with bacterial pneumonia and invasive Group A Streptococcal disease which caused her to go into respiratory and cardiac arrest.
Only later did Dale realize that she and Kamryn’s six-year-old brother, Rylan, had both been sick with milder forms of strep. Medication cleared up their illnesses. Kamryn’s invasive strep left her hooked up to life-support and kidney dialysis.
“At that point, we didn’t know if she was going to live, but I didn’t want to ask,” Dale says. “It was really, really scary.”
As her body shut down, Kamryn’s limbs blackened.
“They felt like charcoal, a hotdog from a fire,” Dale says. “Crunchy and charcoaly.”
On March 28, 13 days after her first birthday, surgeons amputated Kamryn’s right hand, her right leg at mid-thigh and left leg below the knee.
Next week, she will be fitted with prostheses for her legs. For now, the soft nub of her right arm serves her better than a plastic hand, which would be more cosmetic than practical. Kamryn is already becoming more adept at using her right arm along with the remaining fingers of her left hand to pick things up.
“She’s adapted so well,” says Dale, as Kamryn sucks on a sour piece of pineapple, then a pepperoni stick. “It’s hard, but I’m glad there doesn’t appear to be any effects on her brain.
“I just hope that she can be happy. I just hope that she can accept what’s happened and can be successful at whatever she chooses.”
Daniel Ennett has done just that. In 1999, when he was in Grade 1, doctors amputated all his limbs to prevent the spread of toxins from meningococcemia, a deadly infection caused by the same bacteria as meningitis.
Now 17 and a near-honours student in Grade 11 at Austin O’Brien High School, Ennett is an avid gamer, using his chin to manoeuvre the controllers for PlayStation or Xbox games. His core group of four friends often stay over weekends at Ennett’s house, which has ramps to lead from one floor to another and a wide shower to accommodate his power wheelchair.
“You learn to adapt. You grow up with it even though you know it’s a little odd,” says Daniel, who tried out an arm prosthesis years ago, but found it a hassle. Without limbs to help cool his body temperature, Daniel sweats more and the prosthesis often slipped off.
Kathleen Ennett still needs to help bath her son, but Daniel can feed himself by tilting and moving his fork.
“He’s totally accepted and moved on,” Kathleen says. “He doesn’t get angry about it at all. Now, it’s more normal than before.”
Daniel was also hit in his early teens with scoliosis, which curved his spine 90 degrees so his rib cage was over one hip. Surgeries to insert metal rods have largely realigned Daniel, but he now spends most of his time in his wheelchair.
Daniel advises Kamryn’s family to treat her as they would any other child.
“Treat her like she is a normal person,” he says. “Yes, there will be certain restrictions, but those can be gotten around.”
Dale says she’s so thankful that family and friends in Yellowknife, Grande Prairie and Nova Scotia have held fundraisers to help her family stay in Edmonton. Kamryn’s father, Allan, will be heading home soon to Grande Prairie to work in the oilpatch and look after the boys. Dale, who works as a preschool teacher and school liaison worker, will stay with Kamryn at Ronald McDonald House in Edmonton and hopes they can both head home this summer.
“She’s pretty eager and ambitious to go,” Dale says. “If she got through this, nothing is going to stop her.”