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Caring for children in their last days
By Yao Minji

Annie was taken to Butterfly Home around a week after she was abandoned by her parents when she was one year old. She had severe cerebral palsy, her back was completely arched, she couldn't stand up or eat.

The prognosis: Annie had less than six months to live, a common prospect at the Changsha Butterfly Home - a hospice for terminally ill and handicapped children in the capital city of Hunan Province.

Now four years old, Annie has learned to sit straighter with the aid of a special wheelchair.

She also can eat and has something to smile about because of the love and care of nannies.

Staff have prepared papers for her adoption.

"At the Butterfly Home, we care not only about the length of life, but the quality of that life," Lyn Gould, founder and chief executive of Butterfly Children's Hospices, tells Shanghai Daily in an interview in Shanghai where she attended a hospice fundraiser. Gould is a retired nurse from Exeter in the UK.

A similar Butterfly Home is due to open in September in Nanjing, capital of Jiangsu Province, and organizers plan to open one in Shanghai in two years, probably in a hospital.

In the Changsha home today, which is in an orphanage, each of the 26 nannies cares for three children at most. When it was founded in April 2010, it started out with six beds. Over three years, it has cared for around 70 children; 37 terminally ill children received hospice care, six have been adopted and the rest remain or are in other homes.

"Our nannies have been specially trained to look after these children who need a lot of time and care," says Gould. "We try to provide them medical help that can make children feel more comfortable, but only love can restore hope for these children."

The children's palliative care organization recently held a charity event in Shanghai to auction off butterfly-themed artworks created by children from the Tomato Farmer Art Center. The proceeds are donated to the Butterfly Home, named after the beautiful butterfly, a universal symbol of transformation.

In China, the idea of hospice care is relatively new and has developing slowly, to say nothing of specialized palliative care for children who are dying.

Death is traditionally considered an omen of bad luck and the subject is avoided, even when it's inevitable.

The medical care system has been improved significantly over the years, but hospice care and financial support for it still have a long way to go. The quality of care varies greatly.

The first hospice in China was set up by Cui Yitai in the city of Tianjin in 1990, but it was only in the past five years that palliative care services are being provided in many hospitals, primarily for elderly patients.

In Shanghai, at least one hospice is set up in every district, and many hospitals contain an area for palliative care of terminally ill patients. Some children's hospitals have set up similar services, but as in other cities, it's very new.

In Nanjing, where a Butterfly Home is planned, 13-year-old Wang Zhuqing passed away in considerable pain in March, while her parents searched desperately for a place to ease her last days, according to news reports.

Doctors told the family her choice was dying at home or in an ICU that costs 20,000 yuan (US$3,260) per day.

The Nanjing Butterfly home will replicate the one in Changsha and work with local orphanages that often lack resources and expertise to look after these children, says Gould.

At an orphanage, each nanny typically cares for 10 to 20 children, while a cerebral palsy child like Annie needs a lot more time and attention. Gould has established a training package that includes use of basic medical equipment, such as respirators.

Nanny Tao from the Changsha Butterfly Home is looking after five-month-old Derek, who has been taken to Shanghai for medical examinations of a heart condition.

While it takes most children 10 minutes to drink a glass of milk, Derek sometimes needs to spend more than 40 minutes because he is so weak that it's difficult for him to suck.

Tao must carefully estimate the amount he can swallow and then gently squeeze the bottle to feed him little by little. Depending on exam results, Derek is expected to undergo three operations in Shanghai, each costing 150,000 yuan. The Butterfly Home is fundraising for his surgeries.

Changsha's civil services bureau and the city's social welfare institute were contacted by Shanghai Daily for this article, but declined interview requests.

Earlier, the bureau's deputy chief, Cao Zaixing, told Chinese media that services such as the Butterfly Home can greatly relieve pressure on families with seriously disabled and terminally ill children, thus reducing the number of cases of child abandonment.

Gould's dream is to create an environment that allows parents not to abandon their sick and dying children but to place them in Butterfly Homes.

Gould has 20 years' experience in high-dependency nursing and 20 years as a senior nurse. In September 2006, she set up Butterfly Children's Hospices, a nonprofit organization. In April 2010 she opened the first Butterfly Home in Changsha.

"Caring for these children is very different from looking after my own children," nanny Tao, a mother of two, tells Shanghai Daily. "Lyn Gould told us on the first day that we needed love, patience and confidence for these children, and I have really learned and changed after working here for more than two years."

Gould had wanted to help people in China since she was eight years old, watching the movie "The Inn of the Sixth Happiness." Ingrid Bergman played Gladys Aylward (1902-1970), a British domestic worker who went to Yangcheng County in Shanxi Province when she was 30 and later took in orphans. She risked her life many times to help Chinese and led more than 100 orphans to safety during China's War of Resistance Against Japanese Aggression (1937-1945).

Gould first visited China with non-governmental programs in 1994, which affirmed her desire to help. She also realized she would need to live in China in order to do so.

After she retired, Gould moved to China and worked with orphanages where she observed parents leaving sick and badly disabled children at the gates of social welfare institutes.

"I have seen so many parents walking away destroyed and depressed," she says. "They don't want to abandon their children, but due to lack of financial and medical support, they had to make the difficult decision.

"My dream is to build a model to help these children and parents, and this model can be replicated in other Chinese cities, so that parents don't have to make this difficult decision," she says.

Her next step is to work with children's hospital to help parents so that they don't have to abandon their children. The project is in the works and she hopes it will be established in two years in Shanghai.

"Shanghai is the leading city in China," she says. "If we can have a successful model here, every other city will copy it."

If you want to help or donate, write to accounts@butterflych.org or call (0731) 8276-9114.

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