Caregivers play soothing music and hold the hands of those born with incurable conditions as death looms

Colorful rooms, toys and imaginative cartoon pictures present a lively atmosphere at the Rainbow Home in Nanjing, capital of eastern China's Jiangsu province.

However, children and caregivers fight diseases and face death here at the home all the time.

Xiao Jing is a 1-year-old boy with some serious brain disorders. Several times a day, he has to struggle with torturous convulsions.

Besides giving Xiao Jing routine medication, hospice staff often hold him in their arms and gently whisper his name, trying to pacify him.

"We usually adopt hospice nursing to ease their pain and make them as comfortable as possible, because death may approach any time," said Huang Fang, co-founder of the Rainbow Home, a nonprofit organization established in 2014.

Most of the children in the hospice are age 10 or younger, with Xiao Jing being the youngest.

Several of the children at the home have also been abandoned by their parents, as they were born with incurable conditions such as heart defects, brain disorders and liver disease. They have to lie in bed most of the time and take medicine regularly.

Huang said when children do not know how to express their pain and fears, they are likely to cry or scream.

"It's not easy to take care of these terminally ill children. Although most volunteers have compassion for the work initially, they are nervous and afraid to stand close to them, let alone nurse them," she said.

Huang continually seeks support from neighboring communities, and gives training in hospice techniques and nursing to volunteers.

The local government has provided land and infrastructure to the Rainbow Home for free. Each child in the hospice is entitled to a monthly subsidy of 2,020 yuan ($300). The home also receives donations.

"Five years ago, we only had three beds, and the number has now increased to 38. For the past five years, our staff have cared for about 70 abandoned children. Some of them have passed away, while some children have had their lives prolonged because of our care," Huang said.

Every time a child is near death, the hospice staff will play soothing music and hold the child in their arms or hold their hands. "To avoid affecting the child's mood, hospice staff are asked to control their own sad emotions. But sometimes it's really hard," Huang said.

Guo Zhanmin, a former hospice staff at the Rainbow Home who worked there in 2015, left the home in 2017 to become a preschool teacher.

"The first girl I cared for at the Rainbow Home was very cute and clever. We got along so well. I still can't believe that she passed away," Guo said.

However, miracles do happen at the hospice sometimes.

Xiao Yu is a 5-year-old girl suffering from a brain tumor at the hospice. She did not get better after several rounds of surgeries, and doctors said she is too young to sustain any more surgeries. However, to their astonishment, the girl's tumor has been getting smaller without medical intervention over the past few years.

Death is difficult for everyone, and even more so for children and adolescents who may not understand what is happening or why these changes are occurring. Sometimes, excessive medical treatments are likely to increase their suffering, said Zhou Ning, director of pain management at a local hospital.

She said the hospice has accumulated experience in relieving children's pain, which is worth sharing with public hospitals.

Huang said the home plans to cooperate with some hospitals in Nanjing to jointly establish children's hospice care wards.

"In the future, we are going to explore cooperation with community hospitals so as to let the hospice care sector serve more terminally ill children and their families," she said.

Xinhua