Brain-damaged boy's parents put faith in controversial treatment
Neesh and Sandra Campbell don't think they're asking for a miracle, but mainstream medical experts think that's what it would take to heal the brain of their beloved son, Dylan.
That is why the couple is turning to a therapy that's experimental, expensive — and offered by a doctor not licensed to practice medicine.
"They say [Dylan] is in a brain-damaged state which means he'll never come back," Neesh Campbell says softly.
"Nobody's ever given us hope."
The Campbells' struggles began four years ago when their son had a tonsillectomy at the Health Sciences Centre's Children's Hospital in Winnipeg.
It was supposed to be a routine procedure, but it was nothing of the sort. Five days later, the family says Dylan started bleeding. By the time they rushed him back to hospital, they say he was choking to death.
"My son said, 'I can't breathe, I can't breathe.' We kept, uh, wiping his blood up and whatnot — there's blood on his shirt, there's blood on that stretcher," Neesh recalled.
"Then I got kind of mad there and … they had me thrown out of the hospital. And then the security guard came back outside to get me. My son passed away."
Doctors managed to resuscitate Dylan, but by then the damage was done. He had lost so much oxygen that he suffered a "hypoxic ischemic brain injury," according to an HSC medical assessment.
In other words, he can't walk, talk, eat, control his movements or even swallow without the help of machines.
Legally, it remains to be determined why this happened. The family has sued the Winnipeg Regional Health Authority, and the case is still before the courts.
A WRHA spokesperson could not comment on the case or his condition, again, because it is before the courts.
In the meantime, Dylan's prognosis is grim — but not, says his father, impossible.
"When he was laying there in a coma, I've seen a tear come out of his eye," Neesh said.
"If anybody … doesn't know nothing, they wouldn't cry. When I hold his hand, I tell him to squeeze my hands. He squeezes them. They just say, 'Well, it doesn't mean nothing.' Well, to me it means a lot."
That's why Neesh Campbell has spent the past four years searching for a treatment that could help his son. And he thinks he's found it.
It's called hyperbaric oxygen therapy, in which patients are repeatedly exposed to intense doses of almost pure oxygen.
It's a well-documented and legitimate treatment, endorsed by Health Canada for a myriad of injuries. But it's not approved for use to treat conditions like Dylan's.
"Anoxic brain injury is not one of [the approved conditions] because there's not been sufficient evidence produced to justify its use," said Dr. David Harrison, director of the Vancouver General Hospital's hyperbaric oxygen clinic.
"In the absence of credible literature, we don't know who might be harmed and who might be benefited."
Nothing to lose
Lucien Larre, however, begs to differ. Larre is a self-described "doctor" who heard about Dylan's case and offered the services of the Advanced Hyperbaric Oxygen Clinic in Coquitlam, B.C.
There, he says, Dylan stands a good chance of experiencing some improvement with this treatment.
Besides, Larre adds, they have nothing to lose.
"Sometimes statistics upset me," Larre told CBC News.
"By golly, what if there's a medication that comes out that only helps 10 per cent of the people, and your child is dying and happens to belong to that 10 per cent? I would love them to have that treatment."
It's a sentiment echoed by the clinic's director, Ian Lamont.
"Generally, we see a 30 per cent improvement in these cases," Lamont said, adding that he is certain Dylan will benefit from it.
Neesh Campbell agrees. In fact, he has so much faith in both Larre and the clinic that he has raised almost $4,000 to pay for the treatment himself.
Not medical doctors
The problem? Lucien Larre is not a medical doctor.
He's actually a Roman Catholic priest who once ran a program in Saskatchewan for troubled teens — until he got into trouble for his controversial disciplining methods, although he was later pardoned.
And while he has a doctorate degree in psychology, the College of Psychologists of British Columbia stripped him of his licence back in 2007, pending an investigation into his competency.
As for Advanced Hyperbaric Oxygen Centre's clinical director himself, Ian Lamont told CBC News that he too, has no medical expertise.
Instead, he said he is a "clinician," and that one does not need a medical background to perform hyperbaric oxygen therapy.
It's an assessment that concerns people like Harrison, who noted that as a licensed practitioner, he himself must adhere to the standards of both the College of Physicians and Surgeons and Health Canada.
"The real danger is that many of the private clinics … that are providing hyperbaric oxygen for this type of condition are largely unregulated, and one does not know the qualifications of the individual providing the hyperbaric oxygen," he said.
"So there is risk for harm."
It's a medical second opinion that alarms Neesh and Sandra Campbell, both desperate for some treatment to help their son. However, they say it won't dissuade them from seeking this therapy elsewhere.
"This is not about Dr. Larre," Neesh said regarding Larre's controversial credentials.
"This is about hyperbaric therapy. It's about getting the one thing that might help my boy."