Dying boy triggers living dilemma

SHANGHAI – The plight of a baby dying from a serious liver condition has led to heated debate over whether parents have the right to make life or death decisions for their children.

Lying in a bed surrounded by medical equipment at Shanghai Children’s Medical Center, 9-month-old He Shunzhi, who was diagnosed with congenital biliary atresia at birth, will not live for long.

Infants are diagnosed with congenital biliary atresia when a blockage is discovered in the ducts that carry bile from the liver to the gallbadder. If not treated early, the condition may lead to liver damage and cirrhosis of the liver.

In April, He’s parents, both farmers from Sichuan province, took him to Shanghai for treatment, but the expensive medical fees put the couple off. Despite objections from doctors and persuasion from volunteers, the couple removed the boy from hospitals three times and did not decide on treatment over the following three months, missing the best time for treatment.

Doctors said liver transplant surgery could offer a 90 percent chance of curing the disease. Meanwhile, volunteers promised that they could collect enough money to cover the cost of treatment.

But the couple refused, saying they feared the father might lose his physical ability to do farmwork after donating his liver to his son.

“The money should be donated to other needy kids,” said the 36 year-old father, He Xingyun.

The baby was only taken for treatment last week when the mother was found holding him outside a hospital in the scorching sun. Three months without treatment had worsened the baby’s condition and he was suffering severe bacterial infection. His abdomen is turgid and he is in pain every time he takes a breath.

“His case is not very optimistic. We have to cure the infection now, which is very severe,” said Jiang Lirong, a doctor from Shanghai Children’s Medical Center.

It is too late now to cure the baby, although the father has changed his mind and is willing to donate part of his liver to his son.

This tragic episode sparked heated discussion online, with some netizens criticizing the couple for violating the country’s Juvenile Protection Law, and others even accusing the couple of “attempted murder”.

“From a moral point of view, if a child gets sick, parents will do everything possible to save their life,” said Jiao Hongchang, vice-president of the law school of China University of Political Science and Law.

“But from the legal point of view, parents only have the obligation to raise and educate their children. There is no obligation to donate organs. In other words, the father has his own concerns, such as worrying about the loss of the ability to work after liver donation, making him unable to support the family. So he has to protect his physical condition.”

Jiang said the public needs to make a rational distinction between moral condemnation and legal enforcement, because after a liver transplant there can be follow-up problems that could result in the family facing a “double tragedy”.

“Parents should be given more understanding,” he said. “After all, other people cannot replace the patient’s will and force them to choose a transplant, because there can be a lot of problems after transplants.”

Li Sixiao contributed to this story.

Source: China Daily

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