Children’s Liver Disease Foundation (CLDF) have been made aware of the dramatic drop in referrals for investigations into biliary atresia since the outbreak. Around 40 to 50 babies are diagnosed with biliary atresia each year within the UK. In all 3 specialist centres there have been no cases found in the last four weeks and very little investigation activity.

The early signs of biliary atresia are prolonged jaundice, persistently pale-coloured stools and dark urine – these signs are normally picked up by health visitors and GPs through universal contacts and screening. This delay in early recognition is very concerning as extreme delay in referrals means that corrective surgery (Kasai procedure) will not take place. This will lead to poor prognosis with the only resort being a liver transplant. Newborn baby checks are therefore vital, as most cases of biliary atresia are picked up at around 4-6 weeks.

Specialist paediatric liver centres and Children’s Liver Disease Foundation are available to support health visitors to maintain checks and referrals during this outbreak.

You can access CLDF Yellow Alert campaign resources to help recognise the signs and symptoms of biliary atresia including stool chart bookmarks, parent information booklet and jaundice protocol for professionals. You can download resources here or order on the online form.

If you have any queries, please do not hesitate to contact Harpreet Brrang (Information and Research Hub Manager) at [email protected] or call 0121 212 6029.

Read CLDF’s full article about concerns regarding biliary atresia referrals here.

Also, see iHV Good Practice Points for Health Visitors on Neonatal Jaundice developed with CLDF (available to iHV members only):

The iHV is delighted to share updated Good Practice Points (providing up-to-date evidence and references for our members) on Babies who have neonatal jaundice.

Originally written by the Children’s Liver Disease Foundation (CLDF), these updated Good Practice Points (updated June 2019) have been reviewed by Harpreet Brrang, Information & Research Hub Manager, Childen’s Liver Disease Foundation (CLDF) and Alison Morton, Director of Policy and Quality, Institute of Health Visiting.

They set out what health visitors need to know about babies wth neonatal jaundice and also gives information about the CLDF Yellow Alert App.

If you are not a member, please join us to gain access to all our resources.

Personal stories of baby liver disease

In support of this updated GPP, we are delighted to share a Voices blog of a mum’s personal experience of her daughter’s baby jaundice, to help explain the importance of recognising baby jaundice early enough.

In addition, we share a short video to raise awareness of the liver disease biliary atresia. Sadly, Connor’s mum lost her son to this condition following a late diagnosis and, through this video, she hopes to raise awareness of this rare condition. Connor’s mum is desperate to share his story with as many people as possible, especially healthcare professionals, as he was seen by midwives, health visitors, his GP and the local A&E department before he finally had his
diagnosis. By raising awareness through the video, it may prevent this situation from occurring again. The rarity of biliary atresia may well have contributed to the late diagnosis, however despite its rarity biliary atresia remains the most common liver condition of infancy in Europe.