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Center: 'I love these children so much'

By Cang Wei in Nanjing | China Daily | Updated: 2019-05-23 11:39

A girl tries to use a visitor's camera at the center, March 5, 2019. [Photo by Fang Dongxu/Provided to China Daily]

In many cases, the families receive no professional medical or psychological support, and the children spend their remaining days in pain.

A mother in Hefei, Anhui province, whose child had an incurable disease and was told to care for her at home by a local hospital, went to Nanjing to ask Huang for help. None of the mother's family members had professional medical knowledge, and did not know how to insert a gastric tube needed by the child.

The Nanjing center sent a palliative care team to the family. In addition to helping ease the child's pain, they comforted the family members and gave them simple medical training.

"Both we and the family did our best, even though the child died soon after," Huang said. "However, we cannot provide a door-to-door service for each child, due to limited facilities."

Zhou Ning, director of the pain department at the Eastern Theater of the PLA Air Force Hospital in Nanjing, said the pain experienced by terminally ill children is often neglected.

"We used to think that death comes with pain, but most of the pain can be relieved through medical techniques," he said.

"The first step in palliative care is not a comforting environment or family companionship," Zhou said. "It is to ease pain. Only when this is eased, can the children experience the beauty of their environment and their family's companionship.

"Palliative care for children is quite different to that given to seniors. By easing the children's pain, you also ease the parents' pain and society's."

The hospital, where many children and their families have received care, has been cooperating with the Rainbow Center for years.

In May 2017, the parents of a 4-year-old girl went to Zhou for help. The girl, nicknamed Little Fish, had undergone 10 courses of chemotherapy and radiotherapy after being diagn

osed with a brain tumor. Her doctors suggested that she should have no more painful treatment.

The girl, who was given professional medical help to ease her pain, along with comfortable living conditions and outdoor activities, died later that year.

After receiving psychological help from doctors, her parents traveled throughout China. As promised, the father had the girl's face tattooed on his right arm. In every place of interest they visited, he showed the tattoo to people and took pictures.

Zhou said he met the parents by chance last year when they were expecting a new baby.

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