The first-ever club of biliary atresia patients on the Chinese mainland was inaugurated at the Children's Hospital of Fudan University in Shanghai on Saturday. [Photo/provided to chinadaily.com.cn]

The first-ever club of biliary atresia patients on the Chinese mainland intends to track the long-term health conditions of the patients after their operations. The club was inaugurated at the Children's Hospital of Fudan University in Shanghai on Saturday.

Biliary atresia is a congenital disease, of which the primary symptom is neonatal jaundice. The cause of the disease remains a mystery, said Zhen Shan, deputy head of the hospital. The morbidity rate of the disease is roughly 2 out of 10,000 in China, she added.

The majority of these infants need liver transplants to survive. "However, they still face higher risks of liver cirrhosis, malnutrition and developmental retardation physically and mentally after surgical operation, and must be under long-term supervision," Zheng said.

But in reality, many parents of such babies don't go to follow-up check-ups for their children after the operation. Typically they only return to the hospital when the child suffers severe hemorrhage of the digestive tract or development and growth problems.

The club will work as a platform for these parents to exchange information and help each other, said Zheng, adding that doctors will share relevant medical care information with the club regularly via an instant messaging app.

In addition, on-the-spot counseling and lectures on various topics, such as suggestions on vaccinations and nutrition support, will be held each year. Children from impoverished families will also be eligible for free comprehensive physical examinations to check their postoperative liver function as well as physical and cognitive developments.