What is Biliary Atresia?
According to NIDDK, Biliary Atresia is defined by" “...a condition in infants in which the bile ducts outside and inside the liver are scarred and blocked. Bile can’t flow into the intestine, so bile builds up in the liver and damages it. The damage can lead to scarring, loss of liver tissue and function, and cirrhosis.”
Diagnosis of BA typically happens after 3 weeks of age. The symptoms can include Jaundice (yellowing of the skin and whites of eyes), pale coloured stools and the inability to gain weight.
Many tests are done in order to diagnose BA including bloodwork, ultrasounds, CT Scans and a Cholangiogram. Surgery is required to treat Biliary Atresia and a Kasai Procedure is preformed.
Unfortunately, the Kasai Procedure is not a cure for Biliary Atresia and many patients require a Liver Transplant at some point in their life.
Canadian Biliary Atresia Registry (CBAR)
“…collects information on the treatment of Biliary Atresia across Canada in order to optimize standards of Biliary Atresia care and provide a national collaborative platform for research, education, and knowledge transfer. Our goal is to improve the outlook for children with Biliary Atresia by providing the knowledge necessary to deliver the best possible care.”
The Canadian Liver Foundation
“…promote liver health and reduce the incidence and impact of liver disease by providing support for research and education into the causes, diagnoses, prevention, and treatment of liver disease.”
The Hospital for Sick Children (SickKids)
“…Canada's most research-intensive hospital and the largest centre dedicated to improving children's health in the country.”