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SCMP Reporter

LIKE other families with children suffering from liver failure, Lam Kwok-cheung and Lai Oi-chun know what it is like to watch their child dying slowly.

  Six months ago, their three-year-old daughter, Ching-yi, was losing the battle against her biliary atresia - a blockage in the bile duct - and her parents were desperately hoping for a liver donation that never came.

  As those last few weeks of May dragged on, the Lams braced themselves to face the ultimate despair experienced by many parents before them - the death of their child.

   The Lams' story, however, had a happy ending - and in the process made Hong Kong medical history.

  As it became clear that, like so many times before, no cadaveric liver would be forthcoming, surgeons at the Prince of Wales Hospital suggested performing a live liver transplant.

  The idea was to take a piece of either Mr or Mrs Lam's liver and transplant it into Ching-yi.

  THE move was risky. Not only could Ching-yi have died, but the donor's life was also in danger during the marathon 16-hour operation. But the Lams knew this was their only hope of saving Ching-yi.

  ''It was a very difficult decision,'' said civil servant Mr Lam. ''We had to think very carefully.''   But the decision of whether to risk one of their lives - and the equally agonising decision of which one - was made even more difficult by the opposition of family members.

  When the Lams decided for medical reasons that Mr Lam should go under the knife, his elderly parents were very upset. ''They are elderly and they cannot accept this sort of thing,'' he said. ''They were frightened for me.''   In the end Mr Lam did not tell his mother he was going ahead with the operation on May 29 until it was all over.

  Fortunately, the operation - the first live liver transplant performed in Southeast Asia - was a success.

  Today, Ching-yi looks and behaves like any other buoyant, happy three-year-old. ''We treat her as a normal child,'' Mr Lam said. ''We don't take special care.''   Mr Lam has also recovered well from the physical effects of the surgery. But the emotional scars have taken longer to heal.

  Despite the joy he feels today upon seeing Ching-yi romping around with her four-year-old sister Ching-man, he remembers the tears and pain he and his wife went through.

  It is for this reason that Mr Lam set up the Paediatric Liver Transplantation Support Group of Hong Kong in July.

  ''It is to exchange experiences among parents whose children suffer from liver failure - to give support to each other,'' he said. There are about 25 members and the group meets once or twice a month.

  Mr Lam said the parents often shared the same mix of emotions - fear, grief and helplessness. ''They usually feel very depressed and they don't know what to do,'' he said. ''They are usually very afraid.''   If their doctor raises the idea of a live related transplant, they also experience the same worry about surviving the operation and face similar opposition from older family members. ''Their case is the same as mine,'' he said, adding that this was why he was able to offer them emotional support; he understands what they are going through.

  Although Mr Lam chose to risk his life to save Ching-yi by going through with the live transplant operation, he said he would never suggest that the other parents should do the same thing.

  ''I personally would not tell them to do the operation,'' he said. ''In the end, the decision must be made by them.''   And he said he would not judge any one who decided against the move as a ''bad'' parent. ''I think it's not something to feel guilty about,'' he said.

  There were many reasons why a parent might decide not to go through such a risky operation - but this did not mean to say they loved their child less than others, or grieved less over their death.

  Recently the support group experienced the first death of a child since it was established in July. The group had been active in counselling the parents.

   ''It was very hard,'' Mr Lam said. ''[The baby] was their only child.'' It is an experience that Mr Lam and his fellow group members are likely to face many times in the future.

  Although Prince of Wales doctors have performed a second successful live related liver transplant since Ching-yi, with 16-month-old Yuen Ka-wai's operation in August, the hospital has more than 10 children who will need an urgent transplant within months.

  And despite appeals for cadaveric donors - the most recent being for seven-month-old Lam Kin-long, who will die within weeks without a liver transplant - there has been no response so far.

  Prince of Wales doctors are now debating whether to perform a live transplant involving an unrelated donor, after six strangers offered their livers to save Kin-long.

  But they must overcome the huge ethical obstacles first. No such transplant, involving a donor who is giving his liver voluntarily and without payment, has ever been performed anywhere in the world. Doctors are concerned that by going ahead here, they may encourage organ trading in future. They are also worried about the ethical problems of risking the life of someone not related to the recipient.

  In the meantime, the parents of these dying children can only cling to each other for support as they wait with desperate hope for the cadaveric donors that never come.



Ground-breaking transplant saves little Ching-yi from death