One hour a day, five days a week
“Be skeptical of anyone who advertises or offers hyperbaric oxygen therapy to treat conditions such as multiple sclerosis, cerebral palsy, cancer, AIDS, stroke or migraine headaches,” warns the Health Canada website. “At present there is no scientific proof that this therapy is useful in treating these other conditions. Medical experts are still unsure of the scientific validity of off-label uses.”
Yet the family is stunned by the progress they’ve seen, including his dystonia (a rigidity of the muscles caused by brain trauma) clearing up and the baby crying — a sign of progress in this case.
“We’re not consulting with any doctors regarding this,” says Jesse’s grandfather, Bob Arrigo. “We’ve seen by our own experience the positive results that are coming.”
Arrigo notes that the doctors know about the treatment and a neurologist agreed they should try anything.
The family found out about it from a pastor they had known 18 years ago. The pastor read about Jesse’s accident in the newspaper and phoned them, saying he knew a similar case involving a 5-year-old in which hyperbaric oxygen therapy had helped.
The treatment itself involves spending one hour a day, five days a week, in a pressurized container. Jesse experiences 1.5 times the normal atmospheric pressure — the equivalent of being in water five metres below sea level. The tube he’s in is filled with 100 per cent oxygen. Normal air contains about 21per cent oxygen.
“One hundred per cent of your body is made of cells,” says Laurie-Anne Fayle, After a busy morning of music and reading therapy, Jesse takes a short nap with his mother Kristin, in her bed, located beside his. director of Ontario HBOT. “We’re highly oxygenating every cell in the body. We’re forcing oxygen up into his brain with the hope that the neurons that are up there that haven’t died, but are just there idling, they just need more oxygen to repair them to get them back online.”
Dr. Jeff Henderson, an expert in regenerative medicine at the University of To- ronto, says more is not necessarily better when it comes to supplying cells with oxygen. Instead, he suggests that Jesse’s recovery may be due in part to his age.
“I’ve seen injuries to the brain that if they happen to you or I, we’d be dead — there’s no two ways about it. But children have an amazing ability . . . and this has nothing to do with necessarily the repara- tive things we do, but ity of the brain to rep
Dr. Wayne Evans, a in hyperbaric medi General Hospital, agr say if the treatmen Jesse’s recovery, but more research. “Who knows? We
t the intrinsic capacpair itself.” a medical consultant icine with Toronto rees that it’s tough to nt is responsible for
stresses the need for
don’t know. I think that to make claims like this is perhaps, it’d be great if that’s the case but where’s the evidence to support it? Other than identifying that someone’s improved. We see a lot of situations where there are some changes. What’s the cause and effect?”
Evans notes that he’s heard of other successes and thinks it’s an area that merits further study.
Toronto General Hospital has a hyperbaric unit, which it uses to treat patients afflicted with conditions on the pre-approved list. The list is assembled by a committee based on peer-reviewed research, and there hasn’t been enough done in the area of brain injuries like the one Jesse suffered.
“There needs to be more formal research done in these areas,” says Dr. Ken LeDez, chair of the Canadian chapter of the Undersea and Hyperbaric Medical Society. “My organization would be agreeable with assisting with properly structured scientific research into treatment of neurological disorders.”
Evans was involved in a workshop that looked at how the medical community might approach hyperbarics and brain injuries, but a study has yet to be launched as a result of that work.
While it may be difficult to measure the role therapy has played in Jesse’s recovery, his family firmly believes it has made all the difference.
“A few times the doctors reacted like, ‘Is this the same kid?’ ” says Bob. “He is tasting — they put sweet things on his lips and he’s sucking them off. He’s responding to that. He’s tracking you — he’ll look at you and track you. They said that would never happen — that he’ll probably be blind.”
Jesse is tired but vocal when he and Kristin emerge from the chamber. The pair change and get ready for their taxi ride back to Holland Bloorview Kids Rehabilitation Hospital, where they’ve lived together for six weeks undergoing daily therapy.
While the stay at Bloorview is covered by OHIP, taxi rides and hyperbaric therapy are not. The family estimates they spend about $250 a week on taxis for Kristin and Jessie, and each session at HBOT costs $180.
They’re also concerned about upcoming equipment expenses and that Kristin, a single mother, has been unable to work while providing round-the-clock care for Jesse. The pair has slept in his crib for the past six weeks.
“This is not something the family can afford,” says Bob. “We’re probably going to be a couple of hundred thousand dollars into this by the time Jesse’s coming back to us the way we want.”
The family has set up a website to allow people to track Jesse’s progress and donate to his ongoing care. About $26,000 has been raised.
Jesse gets music therapy, physiotherapy and occupational therapy treatments at Bloorview. Kristin has become a nurse to her son. She’s by his side at all times, monitoring his condition and clearing his throat and nose when necessary.
Music therapy is Jesse’s favourite. He lies in bed, able to turn his head slowly. The music therapist strums a guitar and sings in a sweet voice.
“The wheels on the bus go round and round,” she sings.
His eyes lock on her face. His mouth works. A squeal escapes his mouth as she sings, “Ah ah ah,” and Kristin smiles.