Coronavirus has kept many loved ones apart this holiday season, but it has brought four-year-old Yu-yan closer to her family. Diagnosed with a rare condition at just two months old, she has spent most of her life in a public hospital ward in Hong Kong. This was the first time she was able to celebrate Christmas and New Year’s Eve at home.
Yu-yan has biliary atresia, a blockage in the ducts that carry bile from the liver to the gall bladder which prevents the body eliminating it effectively. This can cause liver damage, and may be life-threatening if not treated.
To protect their privacy, her family have not revealed their name. But they have shared the hope and love that have helped the girl survive her difficult journey, on Facebook. Yu-yan Recovery has almost 25,000 followers.
“We have celebrated many festivals in the hospital in the past two years,” Yu-yan’s father told the Post . “We feel really grateful this year that we can spend the holiday together at home.”
When the pandemic hit Hong Kong in early 2020, Yu-yan was released from the hospital as a precaution against Covid-19 . Yu-yan’s father says her condition is stable, so there is no urgent need for a liver transplant, one of two usually effective treatments for biliary atresia.
“We now focus on helping her have physical therapy and rehabilitation training to enhance her physical performance and mobility,” he said.
Yu-yan’s parents chose to keep the holiday celebrations simple — enjoying dinner with Yu-yan’s grandmother instead of a feast with relatives and friends.
“We are already satisfied that everyone in our family is safe and sound,” he explained, “especially when we have to visit the hospital twice a month for check-ups for Yu-yan during the coronavirus outbreak.”
In 2017, Yu-yan was sent to a regular paediatric ward after an operation to repair her bile ducts. While doctors deemed the procedure a success, her post-operative condition worsened and she lost consciousness. Her heart stopped beating for six minutes and Yu-yan suffered brain damage.
Yu-yan smiles a lot, her father says, but she still cannot turn over, sit down or stand up by herself. He asked Chief Executive Carrie Lam Cheng Yuet-ngor for a thorough investigation of the case at Government House.
Her parents questioned the hospital staff’s decision to admit their daughter to a general ward after the operation — when the intensive care unit still had room to receive patients.
A report released in 2018 concluded that certain hospital health-care staff were “inexperienced in recognising the baby girl’s continuous deterioration” . It noted that the medical staff were too reliant on the monitoring machines.
The panel said the hospital’s decision to admit the girl to a regular paediatric ward instead of the paediatric intensive care unit had been acceptable and “did not deviate from international practice”.
Following the incident, Yu-yan’s parents created the Facebook page to post updates of her condition and spread positivity.
Many people have left comments to encourage her family and wish Yu-yan a speedy recovery. “Your faith and optimism have encouraged me a lot (in the) last few years. I pray for Yu-yan’s full recovery and health,” one person wrote.
“Some of my friends told me that reading my daughter’s updates is an encouragement for them,” said the father. “We hope to share our warmth and positive energy with others.”
In the coming year, the family hopes that the coronavirus pandemic will end, and Yu-yan can be officially discharged from the hospital.
“We want Yu-yan’s liver condition to remain stable, and to see a huge improvement in her brain and physical development,” Yu-yan’s father said.
This article was first published in South China Morning Post.
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