Baby with rare liver disease passes away despite best efforts of parents, doctors and good samaritans

By Tiffany Fumiko Tay
The Straits Times
Sun, Sep 11, 2016

Despite the best efforts of doctors and a flood of offers from good Samaritans willing to donate a part of their liver, nine-month-old Zarouhi Singla died on Friday, her father Sandeep Singla told The Sunday Times yesterday.

She was born with biliary atresia, a rare liver disease that affects one in every 15,000 infants and can be deadly.

Mr Sandeep donated part of his liver to his daughter last month but the transplant failed.

A Straits Times story about a week later on his desperate plea for liver donors drew over 200 e-mail from supporters and would-be donors, he said.

About 90 people were picked for compatibility screening at the National University Hospital (NUH), where Zarouhi fought for her life in the paediatric intensive care unit.

However, she developed sepsis, a severe blood infection, which put plans for a transplant on hold.

After weeks of fighting the infection and organ failure, she died from bleeding in the lungs.

Professor K. Prabhakaran, director of the paediatric organ transplant programme at NUH, told The Sunday Times that the team was sad, but proud of Zarouhi, "who had been very brave".

Today, instead of celebrating their sixth wedding anniversary, Mr Sandeep, a general manager at Shell, and his wife, Ms Neha Wilson, will be burying their only child.

The couple, both 34, are Indian nationals who have been living here for about 19 months.

While foreigners are allowed to be buried here only if their next of kin is a citizen or permanent resident, Mr Sandeep had filed a request for an exception for Zarouhi with the National Environment Agency, which was granted late last night.

Mr Sandeep, who is a Hindu, prefers that his daughter not be cremated for religious reasons.

"It is a very difficult time for us. We thought we'd celebrate our anniversary with her, but instead, we are bidding her goodbye."

The couple are touched by the outpouring of support from Singaporeans and plan to stay on, he added.

In honour of Zarouhi, they will set up a charity to help needy kids with medical costs.

"It's painful to live with such harsh memories, but hopefully, we will be able to find a new meaning in life," he said.

tiffanyt@sph.com.sg