Children with liver disease await life-saving transplant

Many children who suffer from a rare congenital liver disorder await liver transplants that are required to save their lives, advocates said yesterday.

Biliary atresia, or blockage of the bile duct, affect two out of 10,000 infants on average, said Chang Mei-hwei (張美惠), president of the Children's Liver Foundation.

The foundation said that around 50 to 60 infants are born with biliary atresia annually in Taiwan, of which around 20 will require liver transplants to survive.

At an event held by the foundation yesterday, pediatric surgeons and families of childrens afflicted with biliary atresia called for more people to sign up for organ donation programs.

The foundation also urged new parents to watch for early signs of the disorder such as abnormally pale-colored stools.

If the condition is discovered early enough, surgeons can perform a procedure in which an artificial bile duct is constructed from the child's own intestine in order to drain bile away from the liver into the gastrointestinal system.

However, the surgery -- known as the Kasai procedure -- only has a good likelihood of success if performed before the liver sustains extensive damage from the build-up of bile, said Ni Yen-hsuan (倪沿玄), professor of pediatric gastroenterology at National Taiwan University.

"The difference in success rate between surgeries completed before 60 days and after 60 days of age is dramatic," he told the press conference.

"However, some children will eventually require a liver transplant even after the Kasai procedure," he said.

Yu Min-lin (余敏玲) said that she noticed her child's white feces days after birth, but it was not until she read a parenting booklet at the hospital that she realized that her child might have biliary atresia.

Her eight-month-old baby Lin Yu-ching (林育慶) is light for his age, but he appears otherwise healthy after undergoing the Kasai procedure.

However, Yu said that she fears his liver will deteriorate to the point where he would need a transplant.

"I cannot give him a part of my liver because I am of the wrong blood type. My husband cannot because he is a carrier of hepatitis B, and we do not dare ask relatives because it is such a sacrifice," she said.

Ni estimated that 10 children who require a liver transplant are currently on the waiting list at NTU's hospital alone.