A Hong Kong couple whose five-year-old daughter “Yu-yan” died in 2022 from a rare liver condition have been put through another emotional ordeal, revealing that their newborn son was found to have a serious heart problem.
The father shared the experience on the couple’s public Facebook page “Yu-yan Recovery” on Sunday, a month after the birth of their son.
The couple, who have not revealed their names, found out about his heart condition four months into the pregnancy.
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The couple, who went to multiple check-ups, were told the baby might need at least three major operations and a heart transplant to survive.
The father said the Christian couple prayed and made a painful decision to terminate the seven-month pregnancy at one stage, despite doctors’ advice to continue monitoring the situation.
“We experienced the plight with Yu-yan and did not want another child to be tortured by major surgery, pain or even a medical blunder,” he wrote on the page with 22,000 followers.
“My wife could not bear the thought of powerlessly watching another child die before her eyes.”
But they dropped the thought after a professor in cardiothoracic surgery also advised continual monitoring and termination only if necessary.
The father said the baby became quiet when they had thoughts of terminating the pregnancy, but became energetic again when they made the decision to keep him.
A maternity check in the eighth month provided a glimmer of hope as the worst-case scenario – left heart hypoplastic syndrome – was ruled out. The syndrome occurs when the left side of the heart does not form correctly during pregnancy.
They were also told there was an 80 per cent chance only one operation was needed after birth.
“We were very encouraged by the good news,” he wrote.
“The baby probably knew we wanted to give him up earlier and had been very quiet, but as soon as we decided to keep him, he became active again, it was painful for my wife but she believed it was all worth it.”
After the baby was born, he was transferred to another hospital for the major heart operation, which took place four days later.
“As we waited for the hospital transfer, I prayed to Yu-yan’s photo on my phone – please ask Father God to help your little brother survive!”
The doctor said the operation came with a high risk because the baby only weighed 2.44kg, below the ideal threshold of 3kg, the father recalled.
But the baby survived the six-hour operation and recovered quickly, allowing the parents to bring him home on the 10th day.
“We hope the baby can carry his sister’s light within him and make a positive impact on society,” the father wrote, as the parents expressed their gratitude to health workers and everyone who supported them along the way.
Yu-yan died in June 2022 from liver failure. The five-year-old was removed from the waiting list for a liver transplant because doctors deemed one was no longer possible.
She suffered from the rare condition biliary atresia and underwent an operation to repair her bile ducts in 2017.
While doctors deemed the procedure a success, her post-operative condition worsened and she lost consciousness. Her heart stopped beating for six minutes and she suffered brain damage.
The father petitioned then chief executive Carrie Lam Cheng Yuet-ngor, kneeling before her to plead for a thorough investigation of the case.
However, an investigation report released the next year ruled out the possibility of medical error as the panel could not ascertain the cause of Yu-yan’s acute deterioration.
The panel was also satisfied with the hospital’s decision to admit the girl to a regular paediatric ward rather than the intensive care unit after surgery, saying it was “acceptable” and “did not deviate from international practice”.
But they noted that certain hospital staff were inexperienced in recognising the girl’s continuous deterioration and were overreliant on monitoring devices.
The father “unwillingly accepted” the report in 2018, but in late June openly pleaded for a medical expert to write an assessment report for the case.
He also wanted to find the health worker who first discovered that Yu-yan’s heart had stopped but quit the job afterwards, or any witnesses at the scene, in a bid to “pursue justice for Yu-yan”.
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