Controversial treatment helping baby in fight against cerebral palsy
July 6, 2009 By Gail Robertson , The Windsor Star
The McCann family is on a roller-coaster ride of emotions right now, but a controversial new treatment for their daughter is providing a glimpse of light at the end of the tunnel. They know things must be kept in perspective without ever thinking too long or hard about the problems that still await them. “We have to live in the here and now or else we’d get overwhelmed. Before I used to react when I’d see a healthy baby and I don’t do it as often or give it much time. Hannah needs me to be functional,” says Margaret Palmer McCann. “There are fewer hills and valleys on the roller-coaster now.” Baby Hannah, at 15 months old, has cerebral palsy. She is unable to hold up her neck, she must be fed through a tube in her stomach and she has seizures. But since a trip to Tobermory earlier in the summer for hyperbaric oxygen therapy (HBOT), a new treatment for CP patients, Hannah has changed. She still has seizures, but now she is calmer and her eyes are able to move from side to side and rest in the middle. Just three months ago she was having difficulty breathing and her eyes looked mostly to the right. “She’s drooling less, which might indicate she’s swallowing better,” says Margaret, adding that she’s not gagging on her saliva as she did before. She’s also taking naps and sleeping through the night. As the skeptic in the family, Hannah’s father John McCann says he went into the HBOT treatments wanting to see proof. “I’ve now seen enough. It’s such an incremental improvement but it’s enough for me to say we need to go back.” The family spent three weeks in Tobermory in June and will return for additional treatments in mid-August, just before John heads back to his teaching job. At home, the anxious moments remain: Margaret is on a stress leave from her job as a pastoral worker at Holy Name of Mary Church. Her own health problems have increased recently and the insurance company is starting to ask questions about her return to work. As well, the couple has launched a lawsuit against medical staff and representatives of Hotel Dieu-Grace Hospital for the problems they say occurred at Hannah’s birth. “We’re hoping we win this lawsuit so we don’t have to always do fundraising,” says Margaret. She says if they are successful with their lawsuit, they will donate money from the fundraisers to other children who need to access HBOT. Finances are a problem for the family and yet, they say their faith encourages them to believe that Hannah will be looked after. On a recent trip to a wishing well, Heather asked for two wishes — one for her sister to get better and one for herself. For now, the family looks to the hyperbaric treatments for relief. The HBOT centre in Tobermory is attached to a medical clinic and has historically been used for treating divers with decompression sickness. The chamber has only this year been opened to people with cerebral palsy to undertake what’s known as anecdotal studies. OHIP covers the cost for decompression. It doesn’t cover cerebral palsy patients. The McCanns heard about the Tobermory clinic after the story about Hannah ran in The Star in April. So instead of waiting until next year to get into a chamber in Picton, they immediately booked 30 treatments. No changes at first after the initial excitement and trepidation of the treatments wore off, the family went through moments of discouragement — especially since Hannah’s seizures didn’t decrease. Midway through the treatments, it was unclear how much change they could see in Hannah’s physical movements. Now, back at their Windsor home, they have seen some positive changes — confirmed by other caregivers who hadn’t compared notes with either parent. Her eye movements are more focused, she is vocalizing her needs and she is no longer keeping her neck always turned to the right. Hyperbaric oxygen therapy involves giving oxygen under increased atmospheric pressure, which increases the oxygen carried in the blood plasma. The increased oxygen intake to the bloodstream causes the blood vessels to shrink and makes the blood oxygen-rich. The oxygen-rich plasma is able to run freely into constricted areas of capillary damage in the brain to promote healing. The therapy is widely used around the world for decompression sickness and severe burns, but it’s also gaining more attention for its use with stroke victims and people with cerebral palsy. Each day in Tobermory John or Margaret went on a “dive” with Hannah, who was outfitted with a space hood that pumped 100-per-cent oxygen for her to breathe while at 24 feet below sea level. The key to HBOT is that the oxygen be given in a pressurized environment. Yvette Serpellini, a parent activist who helped start the Ottawa-based HOT4CP Foundation, says she has seen major improvements in her own two-year-old daughter, although she’s discovered that some people see changes after only a few treatments and others take 100 or more. She says there were three studies from the 1950s in China, Brazil and Canada in which oxygen therapy had been used on premature babies. “But they didn’t use atmospheric pressure and they blinded them. They used just pure oxygen,” say Serpellini. Studies were halted after that. Since then she says HBOT has been conducted on thousands of people, mainly in private clinics. Her daughter has had 170 treatments in clinics in England and Florida and soon will visit the newly opened Ottawa Hyperbaric Oxygen Therapy Inc. Her daughter Rebecca was described as floppy from the neck to the hips and spastic from the hips to the toes. The private clinic in Ottawa is operated by Dr. Uday Chadha, formerly the chief of neonatology and director of special care nursery at the Ottawa Hospital, Civic Site. Every CP child The intent and mission of the clinic is to treat all children with cerebral palsy, regardless of their needs. Currently HBOT is available to relatively few people and often it’s only those with the financial resources who can afford it. Margaret says that without the generosity of Windsor and Essex County people they would never have been able to go to Tobermory. They raised about $10,000 in a comedy night fundraiser and through private donations. The therapy is not covered by OHIP, so it cost the McCanns $3,600 for the treatments plus their accommodations, which ran about $1,000 a week. OHIP coverage of HBOT has not been extended to CP patients, because there’s no formal, documented study accepted by the medical establishment that shows the therapy will improve their quality of life. Serpellini says evidence abounds that the therapy works on people with CP. She’s concerned money may be at the root of OHIP’s reluctance. Dr. George Harpur, director of the hyperbaric facility in Tobermory, says a decision was made to open the chamber for children with CP after parents began calling to ask about access. “There’s been growing public interest. We initially didn’t have any idea of how widespread this use was. Then when we began doing exploration we found it was widely promoted and used in Great Britain, the U.S., Brazil and China. “The biggest problem is lack of a scientific study.” Fight for money Harpur says he tried to get details on studies, but often people are tight-lipped. “It has to do with competition around funding and being the ones who produce results,” he says. “We decided we had to begin to treat some people at cost . . . to gain experience as to what’s going on. Does this really do anything?. . . we want to answer that,” he says, as he sits in his clinic office casually dressed in summer shorts and shirt. Along with the births, cuts, back problems and other issues that come up as a general practitioner, he now has become very involved with children with CP who come to the chamber. He says the administration of oxygen is no longer really considered a medical act, hence the widespread number of private clinics being opened. “It’s become a first aid act,” he says. The chambers are regulated by the Ministry of Consumer and Corporate Affairs. It’s a messy business for parents, says Harpur. “I’d hate to be in their shoes. They need some good answers. And as we look at the shortage of rural physicians we need this fuss and bother like we need a hole in the head. But we saw the need was there and people are looking for answers. So we decided to gear up and go in that directions.” Harpur has been a physician at the clinic for 25 years and involved with hyperbaric oxygen therapy since 1965 as a diver. “It is a remarkably safe form of treatment . . . but you also want to do what’s reasonable. You need to make sure there’s no harm but also that there’s a reasonable chance of benefit.” Currently the Tobermory clinic is doing “open treatment” to gain experience and compile anecdotal evidence about HBOT and CP. So far 13 children have been to Tobermory with parents reporting positive changes. Kathy Brown, who was at the clinic with her 2 1/2-year-old grandson Marcus, first heard about HBOT on a TV newscast. They headed to England in February for 22 sessions and came to Tobermory from Toronto as soon as it became available. She says improvements with his speech have been noted and his hand work is getting more intricate. “But they’re not going to get proof because every child is so different. I know he’d do some of these things eventually but we didn’t expect it this quick,” says Brown, who helps with the care of Marcus while his mother continues to work. “Most of the time CP is about this fantastic brain stuck inside this broken body,” she says. With Hannah, it’s still unclear how much brain damage has occurred. For many children with CP, most of the problems are connected only to their mobility and speech. The McCanns keep working toward finding improvements for Hannah. “God did not cause her disability but he has everything to do with how we handle her disease,” says John. “I used to think I’d feel really burdened but I can not say I feel burdened. For me I only see the things she won’t be able to do.” GOING FOR A DIVE Once the door slams shut on the submarine-like chamber the air feels close and cramped quarters do not make for a very comfortable setting. It’s certainly not for anyone remotely claustrophobic. Two parents, one grandparent and three children are inside, along with one reporter and a “tender,” or attendant. Outside technician Scarlett Janusas speaks through a headphone set to make contact with everyone inside. Inside, tender Randy Perry gets everyone settled and ready. The dive is about to begin. The sensation feels like taking off in a plane and your ears begin to plug up. But you also feel warm and a bit flushed. The parents and grandmother take in all in stride. They’ve done this before so they carry on their conversations, occasionally plugging their ears and blowing. The children, Hannah McCann, Marcus Brown and Julia Meyers, sit quietly with a parent or guardian. Hannah fusses a bit but otherwise seems comfortable on her dad’s lap. “It was draining,” says John McCann, after his first few dives. “I was kind of claustrophobic. It’s like being in a small submarine.” Once at the bottom of the dive, about 24 feet below sea level, space hoods are placed on rings that go around the children’s neck prior to entering the chamber. The hoses — one to bring oxygen in and another to take out carbon dioxide — are attached to the hood. The parents breathe in less-concentrated oxygen piped into the chamber with vents clearing out the carbon dioxide. The technician outside communicates with the tender inside to make sure everyone is comfortable. After an hour at the bottom of the dive, it takes about another 10 to 15 minutes to come back up and the door of the chamber is opened. WHAT IS HBOT? HBOT works by increasing the supply of oxygen to the brain. That concentration is achieved by delivering the pure oxygen in a pressurized environment, such as a hyperbaric chamber. As the pressure increases the oxygen is forced into the bloodstream and then helps in normal cellular functions. It’s also promoted as a way to encourage healing in the brain by stimulating dormant brain cells around damaged tissue and reducing swelling. Hyperbaric Oxygen Therapy has had a long and checkered past. In recent times the controversy seems to centre around how much good the therapy can do for brain injuries and cerebral palsy. Internet sites abound on the topic, especially highlighting the number of private clinics around the United States — a trend creeping into Canada. Rates are in the $60 to $100 an hour range, slightly higher in the United States because of the exchange rate. Many North American hospitals have HBOT chambers for decompression sickness and wounds, but do not use them to treat neurological disorders. Chambers are found at Henry Ford Hospital in Detroit, Toronto General Hospital and other hospitals in Montreal, Ottawa, Halifax and Hamilton. There are private clinics in Vancouver and Ottawa and a chamber in Windsor has been discussed. People have also travelled to Florida to attend the Oceanic Hyperbaric Center under the care of medical doctor Dr. Richard Neubauer. Both Neubauer and Dr. Udhay Chadha of the Hyperbaric Oxygen Therapy Ottawa Inc., were guest speakers at the International Symposium on Cerebral Palsy and the Brain Injured Child held July 23-25 in Boca Raton, Fla. Canadian hospitals do not endorse this treatment for neurological disorders but a study is being done by physicians connected with the Toronto General Hospital. In an earlier interview, Dr. Darcy Fehlings, who is working with Dr. Wayne Evans of Toronto General, says they are seeking funding to do scientific trials at three sites in Toronto/ Hamilton, Halifax and Vancouver. Once the funding is secured they will move on to subject selection. “We need to see if there is any impact on function (for people with CP) before making it openly available to people,” says Fehlings. “This is something very relevant and very current in the field of CP. There’s a lot of enthusiasm for it among parents and families. Families with funds are going to private clinics. So if it helps we need to make it more universally accessible.” Yvette Serpellini of the Ottawa-based HOT4CP Foundation says she wouldn’t want her child to be in a study in which she was not getting proper treatment. Instead, she’s continuing to support research but she’s also pushing to have more chambers available to more people. She is now on the board of an international society, set up by Neubauer, to oversee hyperbaric oxygen therapy and its use in treating things like cerebral palsy
