Society

Couple decide to let disabled child die in hospice

By Jin Zhu (China Daily)
Updated: 2010-02-06 08:58

A Tianjin couple's decision to stop medical treatment for their newborn baby, who suffers life-threatening birth defects, has triggered a huge controversy.

The newborn girl suffers from a congenital imperforate anus and other problems. She has been sent to a local hospice by her family without any medical treatment, with only water to keep her alive, said Zhang Wen, director of Child Welfare League of China (CWLC), a Beijing-based charity group.

The baby, who has not yet been named, was born on Jan 15 and received a series of medical treatments in hospital for an imperforate anus, hydronephrosis, and heart disease, Zhang said on Friday.

But her family finally gave up 13 days later after they realized the baby's condition was "hopeless" and could not be cured, and that the process was extremely painful for the baby, according to Zhang.

The family members were very fatigued and looked wan.

"My wife is very weak now so I told a lie to her that the baby already died as a result of the congenital malformation," the baby's father said.

"I can't bring myself to see the baby continue to struggle along on the verge of life painfully. Passing away quietly would be the best for her," the father reportedly said.

However, the decision angered the public after the case was reported on an online forum. More than 10 netizens even visited the hospice to protest the family's decision and urged for action to cure the baby.

"How does the father know that the baby is not willing to live? He has no right to sentence her to death. It is murder," said a netizen on the forum.

"It was the ninth day for the baby in the hospice. Her crying is getting quieter," Zhang said in her blog.

The family has not refused to treat the baby because of the money. They can afford hospital fees on their own and have shown a cold response to people offering assistance, Zhang said.

"We tried to persuade the parents to give up custody of the baby so that CWLC can have the right to help her with further medical treatment. However, they do not agree and insisted that the baby should not suffer so much pain in her life," Tong Yi, a CWLC volunteer, said.

Obviously, not having custody of the baby is stopping the charity group from providing assistance, Zhu Lieyu, a lawyer, was quoted as saying by Guangzhou Daily.

According to the country's law on the protection of minors, the court may disqualify the parents or guardians when they maltreat the child.

However, since the family is paying the fee for her to live in the hospice, where the staff is taking care of her, it is hard to say that they are not fulfilling their responsibility of guardianship. Therefore, disqualifying the guardians is not possible, Zhu said.

Qiu Renzong, an expert in bioethics from the Chinese Academy of Social Sciences, said such a case is representative of a long-time dispute among bioethics experts.

"In my own point of view, unless the baby is incurable, the family has the responsibility to offer effective medical treatments continually," Qiu said.