“Twenty-five years ago in Calgary, of the seven families with a child born with biliary atresia, only one child is alive today — our child wasn’t one of them. Thanks to the research dollars to the Canadian Liver Foundation and the progress made in liver transplants, most children born with this rare form of liver disease can now expect to survive.”
– Annette Martin
Losing a child is every parent’s nightmare.
When Craig was born 25 years ago, Annette Martin and her husband were told that their newborn son had issues with his liver. Two months later, they were handed even worse news — he had a rare liver disease known as biliary atresia, which affects one in every 10,000 to 20,000 infants soon after birth.
The bile duct outside the liver carrying bile from the liver to the small intestine is damaged. This prevents bile from leaving the liver, where it accumulates and causes progressive damage to the liver tissue. Unless bile flow can be established, liver function is gradually lost and affected children rarely survive beyond two years.
Surgery was performed on Craig to try to unblock the bile ducts, but “it only bought him a little bit of time,” says Annette. Craig’s only chance of survival — rated at 50/50 — was a liver transplant, which at the time was not an option in Canada. He was put on a waiting list and by the time the call came, he had spent all nine-and-a-half months of his life in hospital. Craig’s operation took place in Pittsburgh.
He passed away 10 days later. “We knew we would either come home with him healthy or we would lose him,” says Annette. If Craig had been born today, not only would he have been able to receive a transplant in Canada, but the survival rate is now 90%.
The Martin’s were living in Calgary at the time, where their story was being played out in the homes of seven other families. “Only one child from these families is alive today,” Annette says. As a way to offer support and provide educational resources to families living with liver disease, they decided to form a chapter of the Canadian Liver Foundation, one of 16 national health charities working under the HealthPartners umbrella to transform the health of Canadians. “This chapter has been a tremendous help to children and adults with liver disease — and living proof that donating to HealthPartners works.”
Over 3 million Canadians are affected by liver disease and countless more are at risk of developing liver disease during their lifetime. The Canadian Liver Foundation represents the liver health interests of all Canadians by supporting research, public and professional education and advocating for better prevention, diagnosis and treatment. Through our LIVERight initiative, the CLF is striving to reduce the incidence of preventable forms of liver disease by raising awareness of risk factors and providing practical tools and information to help Canadians safeguard their liver health in daily life.
HealthPartners proudly supports The Canadian Liver Foundation.