Caring for special children

A British couple pour their love on children in a hospice they have founded, Xu Junqian reports from Changsha.

The pink room painted with a mother duck ushering a gaggle of clumsy ducklings on the second floor of Changsha No 1 Social Welfare Institute in Hunan province looks no different from other orphanages or kindergartens. But, the 17 children housed in the clean, colorful, cozy rooms are unusually quiet and have all been given a no-more-than-six-month life expectancy by physicians. Most of the children are lying in their cots or the arms of the nannies. Two of them were with tubes connected to medical machines that are much bigger than themselves.

A few of them, who look more lively, are either sitting in special chairs, staring into blank space, or walking around with stuffed animals.

They are residents of Butterfly Children's Hospice or better known as Butterfly Home, the first home dedicated to special children with short life expectancy in the region.

In April 2010, the 61-year-old retired British nurse Lyn Gould and her husband Alan Gould founded the hospice, after visiting and volunteering at dozens of orphanages in the country for almost half a decade and meeting the rather "forward-thinking" Changsha No 1 Social Welfare Institute.

"Every life is valuable," said Lyn Gould. The line is also one of the "Values and Beliefs" put on the wall of the hospice's corridor.

Born in Exeter Devonshire, Britain, Lyn Gould became a nurse in 1970 and retired in 2005. At the age of eight, she watched the movie, The Inn of Sixth Happiness, featuring Ingrid Bergman, and thus nurtured her dream to pursue a similar course in China.

In spite of her first trip to China in 1994 being more a "nightmare" than a dream, Lyn Gould kept coming to China since 2006, each trip for about three weeks, "learning to eat all kinds of food and using all kinds of toilet", and most importantly, learning the orphanage culture in the country by volunteering.

For the past three years, the hospice that has 13 rooms, 18 cots and is supported by 26 nannies has cared for a total of 70 children so far. All of them are transferred from the welfare institute, after doctors certified that they can only live for less than six months.

At least 37 of the children have died despite the palliative care at the hospice. Seven children went through major surgery, and six have been adopted by families living overseas.

According to her, the children in the hospice have every kind of illness and disability ranging from simple premature birth to complex genetic disorders that lead to an early death.

But, "you never know what kind of miracle could happen to them," said Lyn Gould, hopeful.

Annie, for example, is one of the "surprises".

The three-year-old girl came to the hospice one week after being abandoned at the institute. With a completely arched back that makes her body resemble the letter U, she has a huge neck and her shoulder muscles suffer from frequent spasms resulting from severe cerebral palsy. "I honestly thought Annie was going to die," said Lyn Gould. "She was emaciated, covered in sores and wouldn't eat."

But after four months of tube feeding, medications that help her body to relax, and a lot of cuddle, the "very intelligent little girl" has started to smile, recognized her nanny, and more importantly, is expected to have a longer life expectancy.

The hospice is also preparing adoption papers, hoping somebody can take the girl home.

Lyn Gould pointed that the major difference between the hospice and other orphanages is the bonding among the children and their nannies, who are like mothers to them. They provide not only physical but emotional care.

Lyn Gould, however, is very strict when it comes to taking care of the children.

Every nanny at the hospice can only look after a maximum of three children to ensure that proper attention and care are given to every child.

"Children here get a bath every day with their own towel, and we learn what they each like to eat and like a mother, cook accordingly for them," said one of the nannies at the hospice. The nannies have also been taught to cuddle the children and have direct eye contact when speaking to them.

"We aim for good quality of life, rather than a very long life," said Lyn Gould.

Cui Yitai, dubbed founding father of China's palliative care, believed that the reason very few people pay attention to palliative care is because most hospitals in China are struggling with things like "survival rate" or "cure rate", he told the Bund Picture, a Shanghai-based weekly. It was not until the 1990s that the first palliative care ward appeared in China, through Cui's effort.

The China Children Welfare Policy Report 2011, jointly launched by the Ministry of Civil Affairs, the One Foundation Philanthropy Research Institute of Beijing Normal University and UNICEF, stated that the number of orphans in China has increased by 24 percent from 2006 to 2010, reaching 712,000 by the end of 2010.

The hospice has also received two children who are not physically ill but emotionally traumatized because they have been abandoned by their families.

Lyn Gould said the sudden withdrawal of love and attachment from the supposedly most intimate people in the world could also be fatal for the young children. "It's like one's parents were suddenly killed in a car crash," she explains.

Lyn Gould admitted that she frequently felt like giving up.

"I just looked at the ceiling in the dark and thought I was mad. This is so hard, especially when you are really tired, or emotionally drained because another child you love has died," she shared. "Every time I got tired and am overwhelmed by all the problems, my husband just tells me to give it one more day," Lyn Gould said.

She is planning a second Butterfly Home in Nanjing, Jiangsu province, with the help of Jenine Basaraba, a Canadian whose husband works in Nanjing.

Unlikely to retire soon, Lyn Gould hoped that even after she returns to the United Kingdom to "have a life of my own", Butterfly Home will continue to provide a shelter for children.