WATCH: After spending more than three years on a waiting-list, a young Ontario woman finally received a second liver transplant. But her struggle to find a matching donor has shed light on the shortage of donors in Canada. Cindy Pom reports.
“It was scary for me from the beginning,” recalled Afia Baig, who knew that her daughter’s life depended on whether she would receive a new liver. Three years and eight months later, the good news came.
“I’m very thankful to the family (of the donor),” said Fatima Baig who received a transplant on September 23.
“I can’t wait to go home and get back to a normal life,” she said on her final day of stay at Toronto General Hospital.
Fatima, 21, has not lived a normal life since being diagnosed with Primary Sclerosing Cholangitis at the age of three.
The rare auto immune disease caused her liver to deteriorate to the point where she eventually required a transplant. In 2004, at the age of 11, part of her mother’s liver was placed in her body.
But a post transplant biopsy led to a complication, called a fistula, that caused her new liver to fail while she was a high school student.
In 2011, Fatima was listed for a second transplant from the liver of a deceased person.
“You don’t know when an organ is going to come,” admitted Afia. “In the beginning, we thought we’ll still receive a liver in a month, two months, three months,” she guessed.
It took much longer in part because of Fatima’s B positive blood type, which meant the donor would also have to carry the rare blood type, common among South Asians.
“Most (South Asians) don’t sign up for organ donations. It’s something new to them,” explained Afia Baig, a member of the ethnic community who admitted she never considered becoming a donor until her daughter became ill.
“There are a lot of assumptions that it’s not allowed in religion. But most of the scholars say ‘yes, you should’,” explained the practising Muslim. “I hope more people have the heart to do that.”
In Ontario, only 25 per cent of people are registered organ donors. Within the province’s predominantly Caucasian communities, the registration rate is around 50 per cent. But in culturally diverse areas including Toronto, it is only 14 per cent, according to the Trillium Gift of Life, the province’s transplant agency.
Organ donation is also an issue across Canada, where the rate is lower than several countries including the United States.
According to the federal government, 4,500 Canadians are waiting for a new organ. In 2012, 256 people died before a transplant match could be found.
Fatima and her mother worked with the charity Step by Step to organize a walk in September to raise awareness about organ and tissue donation.
“My hope is everyone will be able to get an organ and there’s no waiting list,” said Fatima.
Until that day comes, she and her mother will keep spreading the word about its importance.