Overview
NSO implemented screening for biliary atresia in January 2023.
What is biliary atresia?
Biliary atresia is a rare but serious disease of the liver and bile ducts. Bile is a digestive fluid that is made in the liver and empties into the intestine to help digest food. It enters the stool (poop) giving it a darker colour. In biliary atresia, bile cannot get from the liver to the stool, causing acholic (pale in colour) stool. This blockage causes buildup of bile in the liver, which can damage it. Without treatment, this can lead to liver failure and eventually death. Treatment for biliary atresia is a surgery to allow bile to move from the liver to the intestines.
How do you screen for biliary atresia?
Parents will be the primary screeners with the help of an infant stool colour card (ISCC) to identify pale stools, which are often an early symptom of biliary atresia. Parents will be given the ISCC by the birth hospital or midwifery practice group. Parents will compare their child’s stool colour to the images on the ISCC during regular diaper changes for the first month of life. If they detect pale stool, they can contact NSO using the contact methods shown on the card. When identification and treatment start early, babies with biliary atresia can have a better chance to grow and develop normally.
What does this mean for you?
Hospitals/Birth Centres/Midwifery Practices:
- NSO will initially distribute the ISCCs to hospitals and midwifery clinics so they can be provided to all families with newborns in Ontario. ISCCs will then be made available, free of charge, using the same distributor used for newborn screening dried bloodspot collection cards.
- The ISCC itself is easy to follow. A brief explanation to parents should be all that is required for its use.
- NSO will provide resources and educational support with materials soon to be published on our website, including translated copies of the ISCC.
- ISCCs will be distributed in January 2023.
Parents/Guardians:
- Use the ISCC to screen your child’s poop for the first month of life.
- If pale poop is present, contact NSO through the contact information on the card.
- If follow up is required, NSO will refer your baby to a specialist for more testing, which usually involves blood work to start.
Stay tuned – we will be sharing more information about screening for biliary atresia in the coming weeks and uploading resources to this section of the NSO website. We encourage you to check-in regularly to the website as new information will be made available. If you have any questions in the meantime, please don’t hesitate to contact us at: nsoba@cheo.on.ca