In a follow up story to last week’s article on sick babies being abandoned by their families in China, ehospice spoke to Katie Hill, Head Nurse at the Butterfly Children’s Hospices in China. Katie describes how they are not only working closely with the Chinese welfare authorities to provide palliative care for the sickest of these babies but also arranging life-saving treatment and surgery.
Butterfly Children’s Hospices work in cooperation with the local Chinese orphanages to establish a model of paediatric palliative and hospice care, providing education and promoting the concept that every life is a gift and valuable. Cooperation between the Butterfly Homes and the welfare centres is central to this work. And in order to achieve strategic recognition and sustainability, government cooperation is critical.
Butterfly Children’s Hospices (BCH) was founded in 2006 by Lyn and Alan Gould. Their mission is twofold, i.e. advocacy and provision of loving care and treatment for children with life threatening illnesses and life limiting conditions in China. The children in the hospices come from local orphanages, having been abandoned by their families. These children are often abandoned by their parents due to their inability to provide the necessary and expensive medical care the child requires.
The hope for the near future is to be able to provide community care services to families, aiming to support them and therefore avoid the pressure to abandon their sick child. We advocate the provision of palliative care for China’s children. We commit to the promotion of cultural and policy changes which support this. We strive to put life and enjoyment into each day a child spends in the Butterfly Home.
The first Butterfly Home was opened in April 2010 in Hunan Province, Changsha, China. In November 2013, the second Butterfly Home opened in Jiangsu province, Nanjing, China. This enables us to care for more children who desperately need loving care.
Currently there are 27 children across the two Butterfly Homes. A total of 109 children have been cared for to date, from age 1 day to 17 years old. Of these children, 57 received loving palliative care, 13 had life changing surgery, 8 have been adopted with another 4 awaiting adoption and 3 are in long term foster care and we have helped 10 families in the community.
In the Butterfly Home, we strive to put life into a child’s day.
Each child is given opportunities to reach their full potential and to achieve appropriate developmental goals. Each child is given the same opportunities, regardless of their diagnosis, life expectancy or what they can contribute to society. The Butterfly Homes provide a stable, loving environment for these precious, fragile children; somewhere they can feel loved, supported and safe.
The love and laughter in the home is indescribable.
What these babies have suffered in their past is heartbreaking; abandonment, loss, neglect. However after a few days in the Butterfly Home they are transformed into children whose lives really matter; they receive love, medical treatment, support and are nurtured to grow and achieve their full potential. Some babies died peacefully and comfortably in their nanny’s arms, closely monitored by their nurses. Some babies have had major life changing surgery, other babies just needed love and encouragement and a reason to survive. Some of these children have got a second chance and been adopted, whilst others are cared for in the community with loving foster families or in appropriate facilities to meet their individual needs.
Cooperation between Chinese and Western staff
With so many precious children to care for, we need large numbers of staff. Cooperation between Chinese staff and Western staff is a huge element to the successful running of the Butterfly Homes. There are teams of dedicated Chinese nannies who provide 24 hour loving care. These women are remarkable; feeding, bathing, caring, loving these children like their own. There is a team of western nurses and a western doctor; working 24 hours a day to ensure the babies have the best medical care possible and to ensure they are comfortable, with no suffering. We also have the opportunity to seek advice from many other medical professionals through online and other resources, to give our children the best care possible and to review all options for each child. The two homes are now managed by administration teams who comprise predominantly Chinese staff with western volunteers for support to ensure the homes run smoothly on a day-to-day basis.
Volunteers welcome
As this work continues to expand there are many opportunities to join our team; from medical personnel including sensory therapists and physiotherapists to hands on volunteers. Contact Lyn Gould at lyn@butterflych.org for more information about how to get involved in this exciting work.
Christopher’s story
Christopher, aged 6 months old, was admitted to Nanjing Butterfly Home in March, severely jaundiced with hepatosplenomegaly. As with most of our children, he had no diagnosis, limited investigations done and no medical history. He was weak, lethargic and in pain. In Butterfly Home, his pain was well controlled, he started to feed well, was becoming brighter and more alert. Most importantly he was loved and started to smile. As he settled in, he had medical investigations in the local hospital and was diagnosed with Caroli’s disease. Hearts were broken when we realised Christopher’s prognosis was poor. Hope vanished before our eyes. Tragically, Christopher passed away two weeks after his diagnosis. He was comfortable, having spent his last days in the arms of his nannies; singing to him, playing with him and loving him. We all mourned his loss, a fragile life taken too quickly. However, we are grateful to have had the opportunity to care for Christopher, the opportunity to make his last few weeks enjoyable, comfortable and full of life, love and happiness. The Butterfly Homes are grateful to have the opportunity to care for these precious babies; to give loving care to these cherished lives. the
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