OTTAWA — When their son Tyler was born in 1992 with a desperately bad liver, Ziad Aboultaif and his wife Elizabeth found themselves in a medical hellhole that lasted two decades.
Tyler has a rare genetic liver condition called ornithine transcarbamylase deficiency that causes a dangerous build up of ammonia that can lead to brain damage and death. At one point, he was taking upward of 19 medications daily. His appetite was so weak that his parents fed him intravenously as he slept at night. There were seizures and kidney failures and seemingly endless other health complications.
Sixty operations later, Tyler, now 23, is alive thanks to three liver transplants. The first, a partial transplant, was from his father, then an Edmonton businessman.
Two weeks later, on Christmas Eve, “everything you can image went wrong,” his father recalled Thursday. “The doctor said, ‘We have 24 hours; we’re facing death.’ ”
Doctors at the University of Alberta’s Stollery Children’s Hospital started an urgent search for a compatible liver from a deceased donor.
Tyler was lucky, but only for a time. A second transplant, also partial, quickly followed, this time from a 47-year-old Quebec man who died of illness. But the liver was already compromised and doctors told the family it was only buying time. Tyler spent eight months in hospital.
The third, whole-liver transplant was from a terminally ill 12-year-old boy, also from the Edmonton area. It’s given Tyler a life for almost four years now.
Aboultaif’s life has changed, too. The former distributor of commercial furniture is the newly elected Conservative Member of Parliament for Edmonton-Manning. And the biggest event in his nascent political career happens Friday.
Sometime around noon, Aboultaif is expected to rise in the House and table a private member’s bill calling for a national organ donor registry and a national strategy to bring together Canada’s patchwork of organ donation services.
Organ and transplant experts say the idea could save hundreds of lives annually and incalculable suffering and torment.
“We’re underperforming as a country and our deficiency is lack of federal government activity,” said Dr. Philip Halloran, professor of medicine at the University of Alberta.
A key measure of how well Canada is performing at organ transplants is the number of kidney transplants per one million people. Canada’s rate is 23 per million, while the United States is 34 per million, or 50 per cent higher.
“Canada is in the lower third of developed countries, certainly below 50 per cent, of donation activity per population,” said Halloran, also editor emeritus of American Journal of Transplantation and chair of the Swiss-based Roche Organ Transplantation Research Foundation, an independent medical research charity that awards operating grants for research projects in organ transplantation.
“We’re not serving Canadians well by the current (kidney) donation rate. That’s a surrogate for the overall activity of donations in Canada,” he said. “Donations in Canada are not performing at the standard that our colleagues in the United States are performing and there isn’t really any excuse except organization and accountability.”
Conservative sources outside Aboultafi’s office say his bill is expected to call on the Liberal government to create a national organ donor registry to replace a patchwork of provincial registries.
“It’s not even a good patchwork,” said Halloran. “Ontario is performing at a relatively high rate, Quebec is performing at a relative high rate, but nowhere in Canada are we performing at the rate that we might consider benchmark.”
Aboultaif’s bill also calls for development of a national strategy to improve organ donation between provinces. Canada is the only developed country without national organ donation legislation, such as the 1984 U.S. National Organ Transplant Act.
It established a national transplantation agency, the United Network for Organ Sharing, operated on a renewable contract by non-government workers.
“Their job is to keep data and to be accountable for the number of organ transplants performed. If they don’t perform they won’t get the contract again,” said Halloran.
Adds Aboultaif: “Canadians are facing an increased amount of kidney problems and from an economic standpoint, it’s much, much cheaper for the system to do transplantation than to do treatment. And it’s much, much better for the patient.
“Until you go through it, no one can understand how precious normal life is.”