The girl was diagnosed with a rare liver disease soon after birth.. Read more at straitstimes.com.
SINGAPORE (THE NEW PAPER) – 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.
Last September, Raenelle’s parents got 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.
Dad’s liver was not a match and mum was pregnant at the time. So, desperate to find a living donor to save the life of her child, Ms Cheng, a 35-year-old housewife, made an urgent plea on Facebook.
On Jan 6, after three heart-rending 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 do not know the identity of the donor.
Ms Cheng is forever grateful to the “selfless” donor and told The New Paper on Wednesday (Feb 17): “We are thankful for the donor. 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.
When asked about the rollercoaster ride of emotions they had to go through over months as their child battled the disease, Ms Cheng, who gave birth to her second child last October, said: “It has been really tough. I remember vividly I worried so much from then until now. We had to travel from polyclinic to polyclinic for tests.
“I was really guilty for not being able to provide Raenelle with a good, healthy, working body.
“So I did everything I could to be with her. 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.”
Ms Cheng also expressed her appreciation to the people that 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 the minds of Raenelle’s parents and it eventually prompted Ms Cheng and Mr Wong, a 35-year-old maintenance specialist, to launch a Give.asia campaign last October to raise money.
The couple raised $100,000, and it helped to cover the costs of suitability tests for possible donors.
Raenelle has moved from the high dependency ward to a general ward, where she still is today. PHOTO: SHIN MIN DAILY
Because of Raenelle’s operation, Chinese New Year was a little different for the family this year.
“(Her) daddy stayed with her on CNY eve. We prepared her CNY clothing from home and slipped her into her cheongsam on the first day of CNY. I also whipped up a simple home-cooked meal and brought it to the hospital for her,” said Ms Cheng.
Travelling to and from the hospital every day was not easy, so when Ronald McDonald House Charities (RMHC) offered the couple a place to stay while Raenelle was in the intensive care unit (ICU), they were beyond appreciative.
Ms Vicky Cheng and Mr Roger Wong with their daughter Raenelle, who was diagnosed with a rare liver disease soon after birth. PHOTO: COURTESY OF VICKY CHENG
“RMHC opened (a family room) just a few steps away from the paediatric ICU wards. We are thankful that we (were) able to catch some rest while being near to Raenelle. This even allowed us to visit her during odd hours,” said Ms Cheng.
“We have a lot of people to thank and (we) will still be needing their assistance. The doctors and nurses have been so encouraging.
“We are fortunate to have many (people) helping us. From the start we didn’t even know how to cope with (this), let alone if there would be anyone who would even be willing to donate part of their organ to save our child,” she added.