Hospice care holds out hope for sick children
Print Edition
Colorful rooms, toys and imaginative cartoon pictures present a lively atmosphere at the Rainbow Home in Nanjing, capital of eastern China鈥檚 Jiangsu Province.
Children and caregivers here fight diseases and face death all the time.
Xiao Jing is a 1-year-old boy with serious diseases such as subdural effusion, hydrocephalus and encephalomalacia. Several times a day, he has to struggle against torturous hyperspasmia.
Besides giving Xiao Jing medication, the hospice staff often hold him in their arms and whisper his name gently, trying to pacify him.
鈥淲e usually adopt hospice nursing to ease their pain and make them as comfortable as possible because death may approach any time,鈥 said Huang Fang, co-founder of Rainbow Home, a non-profit organization established in 2014.
Most of the children in the hospice are under the age of 10. Xiao Jing is the youngest. They have been abandoned by their parents, as they were born with incurable diseases such as heart defects, hydrocephalus and biliary atresia.
Huang said when children do not know how to express their pains and fears, they are likely to cry or scream out.
鈥淚t鈥檚 not easy to take care of these terminally sick children. Although most volunteers have compassion for the work initially, they are nervous and afraid to stand close to them, not to mention to nurse them,鈥 she said.
Huang has sought support from communities. The local government has provided the land and infrastructure for the Rainbow Home for free. Each child in the hospice is entitled to a monthly subsidy of 2,020 yuan (US$300).
It also receives donations.
鈥淔ive years ago, we only had three beds, now the number has increased to 38. For the past five years, about 70 abandoned children have been looked after by our staff. Some of them passed away, while some children had their lives prolonged because of our care,鈥 Huang said.
Every time a child is dying, the staff play soothing music and hold the child in their arms or hold their hands.
鈥淭o avoid influencing the child鈥檚 mood, the hospice staff is asked to control their own sad emotions. But sometimes it鈥檚 really hard,鈥 Huang said.
鈥淲e plan to cooperate with some hospitals in Nanjing to jointly establish children鈥檚 hospice care wards. We are going to explore cooperation with community hospitals so as to let children鈥檚 hospice care serve more seriously ill children and their families.鈥
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