Thunder Bay mother Celine Beaulieu’s bliss at the birth of her first and only child, Braden, quickly turned to horror when a routine test revealed the child suffered from PKU, a rare genetic disorder that can interfere with brain development, causing progressive mental retardation and seizures. She received the diagnosis when Braden was three weeks old. The next day, mother and child were on a plane to Toronto and Sick Children’s Hospital.
PKU (phenylketonuria), which strikes about one in 15,000 newborns, robs the liver of the ability to break down proteins, leaving them in the bloodstream where they can do irreversible damage. It’s not curable, but it can be managed by a severe protein-free diet and supplements to provide necessary amino acids. Education of the parents and continuous monitoring are critical, Beaulieu said at a press conference to announce the refresh of the Smart Systems for Health Agency’s Northwestern Ontario network.
“Because this disease is so rare, there’s no support system here,” Beaulieu said.
At five weeks of age, Braden began teleconference appointments with specialist doctors and dietitians from Sick Kids’ through an Ontario Telemedicine Network facility at Thunder Bay Regional Health Sciences Centre. In his first two years, Braden made the virtual visits to Sick Kids’ about 30 times, Bealieu said.
“It wouldn’t have been feasible to move to Toronto or fly to Sick Children’s that often,” she said.
Video consultations are one of the services offered through the SSHA’s Ontario Network for e-Health high-speed network that connects 7,000 health care sites throughout Ontario.
In an interview, SSHA director of communications Paul Kilbertus said the original network began offering services in 2001. “It’s been a while since the network was architected and looked at,” he said. In 2007, SSHA – now a provincial agency – inked a deal with Hydro One Telecom for the latter to provide its backbone, connecting its 200 largest users – mostly hospitals. With some 7,000 sites connected across Ontario, “the incremental costs (of connecting new sites through service providers) were quite high,” Kilbertus said.
Also, since 2001, demands on the network have changed, with users asking for bandwidth-intensive services like digital imaging of X-rays, Kilbertus said.
But Hydro One Telecom isn’t everywhere in the province, so when it came time to refresh the network in Northwestern Ontario, the company negotiated a subcontracting deal with TBayTel, a municipal telco owned by the City of Thunder Bay (and a bidder in the ongoing advanced wireless services spectrum auction). Delivering timely health care to northern residents is challenging, noted TBayTel acting president Don Campbell. The 48 sites TBayTel will service include many small and remote communities.
“We’re proud of our commitment to the North,” Campbell said.
SSHA chair Michael Lauber also pointed out the economic benefits to such small communities as Red Lake and Manitouwadge, where the community will have access to similar high-speed infrastructure to that of the rest of the province.
“This is probably the most dispersed area we deal with,” said Nancy Lunn, director of carrier relations for Hydro One Telecom. There are many applications for health care providers, patients and the community, she said.
“That technology can save lives, but only if you have access to it,” Lunn said.