Being shaken by a caregiver left Carter Keith trapped in his own world. It’s a tragedy that never had to happen.
A preventable tragedy. Christine Keith of Welland, with son Carter, who received severe brain damage after being shaken by a caregiver, hopes other parents won't have to live with shaken baby syndrome.
A small school bus pulls up in front of the Welland home of Kevin and Christine Keith, and six-year-old Carter Keith is lifted out of the bus on his special wheelchair.
Mom Christine wheels him in through the garage of the house, up a ramp into the cozy living room before lifting him on to his spot on the couch. The family’s little black terrier, Nemo, is abuzz with excitement with the boy’s arrival, jumping up next to Carter with obvious joy.
If Carter notices the dog, it isn’t evident. He stares upward toward the ceiling, appearing lost in his own world.
Outside, Carter’s 11-year-old brother Kevin is arriving home. He and his friends pelt each other with snowballs. The weather might be playing havoc with drivers, many of whom have ended up in ditches in the first winter blast, but it’s a kid’s wonderland.
Christine looks at Carter and wonders if he would have enjoyed making snow forts or snow angels if not for that split second five and a half years ago.
Carter was five-and-a-half months old. The Keith family were living in Iowa at the time, and Christine had just returned to work as a professor of computer science after her maternity leave. They’d found a woman operating a day care out of her home they thought they could trust.
But about 10 days after she returned to work, Christine got summoned to the emergency room of the local hospital.
Something terrible had happened to Carter.
Rushing to the hospital, Christine found her son fighting for his life.
Carter was airlifted to a children’s hospital, where he was placed in the intensive care unit. A battery of tests showed the toddler had suffered devastating brain injuries by being shaken violently by his caregiver.
Carter had shaken baby syndrome. He would never be the same — nor would his family, including sister Kennedy, 10, and dad Kevin.
After 44 days in hospital, including a stint in a brain rehabilitation centre, Carter was sent home to his family. His prognosis was grim.
“When we took him home they told us we were bringing him home to die,” said Christine. “They told us he wouldn’t live to be three.”
Carter has so far beaten the odds, but the Keith family is realistic.
Because of his extensive brain injuries, Carter has had to undergo numerous medical procedures, is on special medication, and is fed through a tube attached to a valve on his abdomen.
He can’t walk or talk. His hips have dislocated. His spine is curving, raising the possibility of his rib cage pressing against his lungs.
He has to get botox injections because he has spasticity, a neurological disorder in which muscles are involuntarily contracted: Carter is unable to bend his knees.
He will be seven years old in March. Christine still has to change his diapers.
“He should be running outside to play in the snow with his brother and sister,” said Christine, cradling Carter. “But you don’t recover from this.”
Shaken baby syndrome (SBS), sometimes referred to as abusive head trauma, results when someone shakes a baby or toddler rapidly. Babies have weak neck muscles and comparatively large heads: violent shaking can cause their brains to slam back and forth against the insides of their skulls, and cause tearing or shredding of blood vessels in the brain.
The damage can lead to death or life-long disabilities such as blindness, paralysis and profound developmental problems, according to the Alberta Shaken Baby Syndrome Prevention Network.
Niagara Region’s public health department has teamed up with community partners to launch a new campaign to raise awareness of, and promote prevention of, shaken baby syndrome.
Amanda Hicks, a manager in family health at the Region, said parents and caregivers can cause the devastating brain damage by just shaking a baby for seconds. In the vast majority of cases, they lose control because they’re pushed to the edge by the baby’s crying, said Hicks.
Exactly how many cases of shaken baby syndrome there are out there isn’t clearly known. A study led by a researcher with the University of Ottawa in 2003, in conjunction with the Canadian Shaken Baby Study Group, identified 364 cases in Canada between 1988 and 1998. But the researchers conceded those cases represent “only the tip of the iceberg,” because many cases are not reported or are misdiagnosed.
There are also worrisome signs the grim economic picture of late may be pushing the cases of SBS up.
In May of this year, the results of a multi-centre study led by Dr. Rachel Berger of the Children’s Hospital of Pittsburgh were presented at a Vancouver conference. Berger’s study found that since the brutal recession hit, the number of SBS cases have spiked sharply.
“This suggests we may need to dramatically increase our child abuse prevention efforts now and in future times of economic hardship,” she said.
Hicks said the new campaign aims to remind parents and caregivers that it’s normal for a baby to cry, and to seek help or coping mechanisms if they’re feeling stressed.
“If you feel like you might lose control, put the baby in a safe place and walk away or ask someone for help,” she said.
Previous experience has shown that education campaigns can have a big impact on SBS rates. A white paper by American researchers in conjunction with the U.S. National Center on Shaken Baby Syndrome found that an education program for new parents in eight counties in western New York State over six years resulted in the number of documented SBS cases plummeting 47 per cent.
At the Keith household, every thing possible is done to bring a sense of normalcy to Carter’s life. He goes with the family on excursions to the mall and swimming, and is a Grade 1 student at Holy Name Catholic School in Welland where fellow students have embraced Carter as one of their own.
“The way they treat my son, what an amazing group of kids,” said Christine. “It makes us so happy.”
Christine, meanwhile, hopes that by raising awareness of SBS she’ll combat a lingering, hurtful stigma. More than once, staff at hospitals have assumed she’s Carter’s foster mom, assuming wrongly that his natural mother — not a caregiver — must have caused his brain injuries.
She also hopes to prevent other families from having to live with SBS.
“We can’t fix Carter,” she said. “But if we can prevent one child from being hurt, that would mean a lot.”
With Christmas just around the corner, it’s a bittersweet time for the Keiths. Instead of shopping for model sports cars or toy dinosaurs for Carter, Christmas typically entails buying ‘gifts’ such a nursing pillows to keep him propped up.
“He should be getting ready for Santa,” said Christine. “He should be getting excited about Christmas.”
And despite brain scans showing little brainwave activity in her son, Christine clings to the belief that Carter is more aware than he appears.
“I’ve never felt my son give me a hug,” she said. “But I know he knows I’m his mom.
“I know he loves me.”