THE nine-month-old infant He Shunzhi moans in bed as his hand falls down on his belly, which has grown to the size of his head due to a bacteria infection that causes him pain every time he takes a breath.
The baby is dying in the Shanghai Children's Medical Center before he can learn to speak, with his limited remaining days supported by long tubes, oxygen and medicines, doctors said yesterday.
He has been suffering from congenital biliary atresia since he was born, a disease not common among newborn infants but totally curable after a series of operations. But his parents, both farmers from Sichuan Province, quickly gave up on their baby.
During the past three months, He's parents have removed him from hospitals three times despite objections from doctors, turned down advice on liver transplant surgery that was given a 90-percent plus chance of success to cure the disease, and refused all donations to cover the cost of the transplant.
"Just donate the money to other poor needy children," said the father surnamed He.
The baby was finally sent back to the hospital last Thursday after people had seen the mother holding the baby outside the hospital in the hot sun on July 9, waiting for his death. They reported to police that the mother, surnamed Zuo, was "attempting murder."
The family said they are giving up on the baby because they fear the 10 percent failure rate of the operation. They also said the father wouldn't donate part of his liver to his son in fear of losing his physical ability to farm or damaging his own health.
"It's totally unbelievable," said an official surnamed Xia with the hospital. "We have the chance to cure the disease via the liver transplant in April and the father has been proved to be the perfect candidate for the surgery, but he refused to sign on the papers and left."
She said volunteers had even promised to cover the 100,000 yuan (US$15,487) to 150,000 yuan cost of the transplant and reassured the parents that money wouldn't be a problem. But the father insisted on no treatment.
In the following three months, the baby's condition deteriorated day by day until he suffered severe bacteria infection that prevented the doctors from carrying out the transplant, meaning he was past the point of no return. To make matters worse, the parents and baby were living on the streets, kicked out of their apartment by a landlord who irrationally feared the baby's disease might spread to other residents.
The tragedy of the baby sparked heated discussion among local residents over whether parents have the right to make life-or-death decisions for their children.
Many volunteers who have offered money and help to save the infant accused the parents of murdering the baby. "If he died, he wouldn't die of the disease, but died under his parents' hands," said a 39-year-old mother surnamed Zhou.
Others argued that volunteers had no right to get involved in the family's business.
According to local lawyers, the father's refusal to donate his liver to his son didn't violate the country's Juvenile Protection Law.
"The law requires parents to send their children to the hospital for medical treatments if the disease is curable and they are capable of paying the expenses, but it doesn't force parents to donate their organs," said lawyer Wang Zhan.
Wang said the father didn't violate the law, since he had spent all of his money on the medical treatment, although people may blame him for his moral selfishness and ignorance.
However, Wang said the case reveals a loophole in the medical and legal systems, because the Juvenile Protection Law protects parents who refuse to make the decision to save their children, and it protects government facilities and hospitals that can legally look away and do nothing to alter the decision.
Zuo, the baby's mother, told Shanghai Daily yesterday that her husband had changed his mind and was now willing to offer part of his liver to the boy if the bacteria infections could be cured. But the doctors said it's too late.
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