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Biliary atresia in the clinical negligence setting

Medical negligence lawyer Kirsten Wall looks at a rare condition that if left untreated can have serious health consequences

Baby with drip in foot
Kirsten is an experienced medical negligence solicitor with a particular interest in cases involving the delayed diagnosis of cancer, including Hodgkin's and non-Hodgkin's lymphoma.

What is biliary atresia?

Biliary atresia is a childhood condition in which the bile ducts, that carry bile from the liver and gall bladder to the duodenum, are scarred and blocked.  This leads to liver damage.  The causes of biliary atresia are not fully understood but it is, thankfully, rare, occurring in approximately 1 in 16,000 births in the UK.  

Typically, the first sign of biliary atresia is jaundice (a yellowing of the skin and possibly also the whites of the eyes), which is the result of the build-up of bile in the liver.  

The condition is treated with an operation called a Kasai procedure when the blocked ducts and gallbladder are removed and replaced with a segment of the small intestine.  If the Kasai procedure is successful the prognosis for infants is transformed: 80% of children with successful surgery will survive into teenage years without requiring liver transplantation.  Where the surgery is unsuccessful, progressive liver failure occurs and transplantation is the only lifesaving option.  

Early diagnosis of biliary atresia is critical for achieving a good surgical outcome.  Healthcare professionals such as community midwives and GPs therefore play a very important role in diagnosing the condition in a timely manner.  Neonatal jaundice is common in newborns and is caused by the build-up of bilirubin in the blood.  It is not normally a cause for concern and usually goes away on its own within the first one to two weeks of life.  Infants with biliary atresia, on the other hand, are usually born without jaundice and go on to develop it later.

Evidence suggests that diagnosing and treating biliary atresia before a child is two months old is crucial.    

Case study

I recently acted for a young client, James, who suffered from biliary atresia.  He developed jaundice after birth which got progressively worse.  He also had very pale stools and dark urine – both also typical signs of biliary atresia.  James’s parents were very concerned by his symptoms and sought frequent advice from the Community Midwife, General Practitioners, Practice Nurse at their GP Surgery and even a Private Paediatrician when their previous concerns went ignored.  Despite their efforts, James’s biliary atresia was not diagnosed until it was too late for surgery to be successful.  

As a result of the missed opportunities to diagnose the biliary atresia, James’s Kasai procedure was unsuccessful and he required a liver transplant.  He received substantial damages for the negligent delay in diagnosing the biliary atresia.    

Whilst the condition is rare it is important that all health professionals dealing with new born babies are aware that it exists, and that they act quickly to diagnose it.  This will not only avoid a potential clinical negligence claim, but will mean that the affected child has a much better chance of avoiding a liver transplant.

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