EC Gastroenterology and Digestive System

Biliary atresia is a progressive, fibro-obliterative disorder of the intra and extrahepatic bile ducts among new-borns. Globally one in 15,000 births suffer with this condition. In India with an annual birth of 25 million we expected from 2500 - 5000 births with this defect annually. Bile drainage can be restored by Kasai Porto-enterostomy, if the surgery is done before all the intrahepatic bile ducts leading to the porta hepatis are destroyed. If the diagnosis is delayed to later months, primary liver transplantation is the only option to save the affected babies. Most affected children will eventually develop end-stage liver disease and require liver transplantation. Children with biliary atresia often experience long wait times for transplant, across the world including advanced countries like USA and UK due to family’s preparedness or even lack of the facilities except in a few metropolitan cities. The insurance system of a country also delays the process.

The objective of this article is alert the community and the health system to rise above petty administrative issues of jurisdictions and provide unconditional services the new-borns with Biliary Atresia. The author presents in this article two case reports in August 2022, first case wherein liver transplantation was required due to failure of the initial Kasai hepato-porto-enterostomy failed and the second case in which primary liver transplantation was required due to delayed diagnosis, the hardship family had gone through due to non-transferable inter-state health assurance scheme, drawing attention of the Governments for mitigation.

A private Hospital in Whitefield Bengaluru reported a child of 11 months operated for BA on 23 August 2022. The family from West Bengal was referred from Kolkata. The father who had no valid insurance coverage despite Ayushman Bharat, a much-acclaimed Health assurance scheme in India for 5 years had to spend 1.5 million Indian Rupees (20,000 US$) by selling his land, apart from giving a part of his own liver. Discharged father after 10 days and baby after 3 weeks hospital stay. The father has recovered fully, and the baby is also doing well though under follow-up. Mumbai’s Nanavati Hospital did a live donor Incompatible liver transplantation.

Apart from families, government, insurance companies and even the facilities and surgeons need to join hands for this arduous process. Unless exceptional attention is granted it is difficult to save these children.

Reports on the ordeals of two cases of Liver transplants one in Bengaluru and another in Mumbai in August 2022 in India, Review of the literature and the struggle of the families in mobilizing the resources and accessing the services.

Keywords: Bile Duct; Biliary Atresia; Liver Transplantation; Porto-Enterostomy; Ayushman Bharat; State Health Assurance Schemes

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