CNY joy for family, thanks to anonymous liver donor

Child with liver disease was given six months to live unless she could receive transplant

Ms Vicky Cheng and Mr Roger Wong with their 17-month-old daughter Raenelle, who was diagnosed with biliary atresia soon after birth and needed a liver transplant. Ms Cheng made an urgent plea for help on Facebook, and the National University Hospital
Ms Vicky Cheng and Mr Roger Wong with their 17-month-old daughter Raenelle, who was diagnosed with biliary atresia soon after birth and needed a liver transplant. Ms Cheng made an urgent plea for help on Facebook, and the National University Hospital eventually found a match in an anonymous donor. Raenelle had the surgery last month and was moved from a high dependency ward to a general ward just in time for Chinese New Year.PHOTO: COURTESY OF VICKY CHENG

When their daughter Raenelle was diagnosed with biliary atresia - a rare liver disease - at 1½ months old, Ms Vicky Cheng and Mr Roger Wong were devastated.

In September last year, Raenelle's parents received even worse news - doctors said the 17-month-old had end-stage liver disease and gave her six months to live, unless she could get a liver donor.

Mr Wong's liver was not a match and Ms Cheng was pregnant at the time.

So, desperate to find a living donor to save her child's life, Ms Cheng, a 35-year-old housewife, made an urgent plea on Facebook.

On Jan 6, after more than three heartrending months, the National University Hospital (NUH) found a match in an anonymous donor.

The Transplant Ethics Committee conducted a review of the case on Jan 13 and Raenelle had the surgery on Jan 20.

Two weeks after the surgery at NUH, the family's spirits were lifted even further - just in time for Chinese New Year - after she was moved from the high dependency ward to a general ward, where she still is today.

Because of confidentiality issues, the family does not know the identity of the donor.

Ms Cheng is forever grateful to the donor and told The New Paper on Wednesday: "Immediately after the transplant, we wrote a thank-you card and got the hospital to pass it to the donor. We really cannot thank the person enough."

Biliary atresia is a rare disease in infants where the bile ducts in the liver are inflamed, blocking bile flow to the gallbladder and eventually leading to liver failure.

Ms Cheng, who gave birth to her second child, a boy, last October, said: "I cried in the middle of the night holding her and teared when she was poked (during injections)."

She recalled her anguish when told she could not be a donor for her daughter.

"I asked whether I could be a donor but the doctors said that I could not donate my liver within a year of my son's birth. I didn't think my girl could even afford to wait six months," she said.

Ms Cheng also thanked the people who reached out to her and volunteered to go for the donor suitability test after she posted her plea on Facebook. More than 50 people responded to her post.

While fears for their daughter continued to grow, mounting medical bills also preyed on their minds - this eventually prompted Ms Cheng and Mr Wong, a 35-year-old maintenance specialist, to launch a campaign on fund-raising platform Give.asia last October.

  • >50

    Number of people who responded to Ms Cheng's urgent plea on Facebook for a living liver donor.

    $100k

    Amount the couple raised on a Give.asia campaign.

The couple managed to raise $100,000, which helped to cover the costs of suitability tests for possible donors.

Because of Raenelle's operation, Chinese New Year was a little different for the family this year.

Said Ms Cheng: "(Her) daddy stayed with her on CNY eve. We prepared her clothes from home and slipped her into her cheongsam on the first day. I also whipped up a simple home-cooked meal and brought it to the hospital for her."

Travelling to and from the hospital every day was not easy, so when Ronald McDonald House Charities Singapore offered the couple a family room at NUH to stay in while Raenelle was in the intensive care unit, they were beyond appreciative.

"We are thankful that we were able to catch some rest while being near Raenelle. This even allowed us to visit her during odd hours," said Ms Cheng.

"We are fortunate to have many people helping us. At the start, we didn't even know how to cope with this, let alone if there would be anyone who would be willing to donate part of their organ to save our child."

THE NEW PAPER

A version of this article appeared in the print edition of The Straits Times on February 19, 2021, with the headline 'CNY joy for family, thanks to anonymous liver donor'. Subscribe