The parents of an 11-year-old boy with cerebral palsy who died on his second visit in seven days to the ER at Comox Valley Hospital want changes in the health-care system to prevent similar tragedies.
Nikki and Marty Robbins say they brought son Brayden to the hospital on Nov. 12 with an “excruciating headache,” a tilted head and numbness in his nose.
He was suspected to have torticollis — a common neck spasm — and was given Ibuprofen and prescribed a muscle relaxant, and sent home without a requested CT scan.
Six days later, Brayden returned to the ER with a severe headache. This time his entire body was rigid and he was inconsolable.
He was again thought to have torticollis and given Ativan and morphine to calm him down and dull the pain. He immediately began vomiting, which was thought to be an allergic reaction, so he was given Narcan to reverse the effect of the morphine.
Almost three hours later, he was intubated, and fell into a coma.
He died the next morning, Nov. 19, of cardiac arrest from complications of a brain bleed and hydrocephalus.
His parents say Island Health did not follow up with them until they asked for a critical incident report on what happened.
The report they received in May was “appalling,” said Nikki Robbins, who called it a “cover our butts” letter that demonstrated no accountability.
“We believe his death was preventable and as a family, we don’t want other families to ever have to go through what I would say we were dragged through that night.”
The parents can’t understand why their son was not immediately given a CT scan or transferred to Victoria or Vancouver, where they believe the fluid in his brain would have been drained and he would have had a 90 per cent chance of survival.
“We asked for a CT scan a number of times,” said Nikki Robbins, adding no imaging was done until it was too late. “There was a clear indication a CT scan needed to be done.”
They said they were not asked essential questions and later learned ER staff did not have access to Brayden’s extensive chart at Comox Valley Hospital or B.C. Children’s Hospital.
Brayden had suffered a stroke in the womb that caused cerebral palsy hemiplegia, resulting in partial paralysis in his lower right arm and hand, and he wore a leg brace. He had gone through many surgeries as a result.
Robbins, a registered nurse, said her insights were “repeatedly dismissed.”
By the time the need to transfer Brayden out of Comox Valley Hospital was evident, a “bomb cyclone” was bringing hurricane-strength winds, there was a lack of staff for the transport team and there were mechanical issues with the transport helicopter.
Prior to moving to the Comox Valley from Langley three years ago, the couple established that Comox Valley Hospital had both a pediatric centre, a helicopter pad, and a CT scanner, Robbins said, which made them comfortable making the move.
On the night of Nov. 18, however, they learned there was no pediatrician on site, said Robbins. “There was nobody available until it was about three in the morning and Brayden’s in a coma.
“We kept on saying he needs to be transferred, that was a huge concern of mine, and he needs a CT scan, like multiple times we said this to the workers.”
The Robbins previously wrote to Health Minister Josie Osborne on June 23, outlining the circumstances that led to their son’s death and presenting a list of recommendations to prevent similar tragedies.
The family also filed a written complaint with the College of Physicians and Surgeons of B.C. and with the B.C. College of Nurses and Midwives.
“Despite his complex neurological history and evident clinical red flags, Brayden’s condition was not appropriately recognized or treated,” the complaint says, pointing to gaps in pediatric emergency care they say contributed to his death.
The Robbins family wants to see mandatory pediatric emergency training, formal family-centred communication protocols, best practices in pediatric charting and standardized transportation of complex pediatric cases.
The family also recommends immediate investment in pediatric transport staffing and response capabilities, prioritization of pediatric-trained physicians and nurses at regional hospitals, transparent audits and reviews of all unexpected pediatric deaths, and trauma-informed training for emergency health-care staff.
The parents also said it’s essential that families be included in clinical decision-making around pediatric patients and said that was not done with Brayden.
Courtenay–Comox Conservative MLA Brennan Day, critic for rural and seniors health, is calling on Osborne to meet with the family and commit to a province-wide review of pediatric emergency care and medical transport systems.
Day had a letter delivered to Osborne on Tuesday saying the system is “fundamentally broken” if a mother who is a nurse with 30 years of experience, a former patient care supervisor and a current nursing instructor at North Island College can’t get the care her child needed.
Day said Brayden’s life can be honoured “by making sure no other child — and no other family — is left to endure this kind of preventable tragedy.”
In a statement, Dr. Ben Williams, Island Health’s chief medical officer, extended condolences to Brayden’s family over the “heartbreaking loss” and acknowledged the impact it has also had on the care providers involved.
Island Health has communicated with the family, which has received a detailed response to their questions, he said.
As well, a multi-agency review is underway with representatives from Island Health, B.C. Emergency Health Services, B.C. Children’s Hospital and Child Health B.C., Williams said.
Robbins said she was told that the multi-agency safety review will not be made public, as she maintains it should be.
Brayden, who attended Queneesh Elementary Montessori Program, is described by his mother as extremely curious with the mind of an engineer and willing to try any new experience.
An only child, he was “highly independent” and despite his disabilities, learned to ride a bike, ski, ride horses, play soccer and kayak, his mother said.
He learned to swim with one arm, she said, because he needed to do that to go to air cadets, which he would have attended this summer.
Brayden dreamed of becoming a pilot, she said. “He was bigger than life and he had such a joy for life.”
There is a gofundme page for Brayden’s parents.
