Created for: https://butterflyhospice.org/
At Butterfly Children’s Hospices we provide loving care and treatment for children with life-limiting conditions and life-threatening illnesses at our hospice in Changsha. Some children have been abandoned, others are brought to us when families can no longer face the journey alone. But no matter how small or how sick, we give each child the love, care and medical attention they need.
Our mission is to ensure that all children are afforded dignity and love in life and death. Above all, we want to keep families and children together wherever possible, and to support the families and caregivers of fragile children to access and provide the best palliative care available.
Our vision is to become a beacon for children’s palliative care services in China, advocating, inspiring and training excellence in palliative care for very sick babies and children. To achieve this we are working in partnership with government, hospitals, social welfare institutions and professional associations across China, to train and support holistic models of children’s palliative care.
We believe that:
- Every child’s life is valuable, and should be valued, no matter how short.
- The voice of the child and their family underpins every action we take.
- Dignity in death should be afforded to every child
- Every child should be given the opportunities to achieve their full potential in life
- Every opportunity should be taken to educate and support families and assist them to make an alternative choice to abandonment of their child
It is estimated that there are 21million children worldwide who are in need of palliative care. 4.5million of those children are in China.
The Butterfly Children’s Hospices were set up in 2006 after many years of independent charity work in China by our founders – Lyn and Alan Gould. They saw first hand just how desperate a situation many children and families were in, and became determined to help. Since then we have held and loved over 200 very sick babies and children. Some are only with us for a day. Others have gone on to have life changing surgery, and over 30 have been adopted by forever families – to love and bless them with a full life.
Today we employ a variety of staff and volunteers in locations around the world as a registered international charity. Since 2010 we have been working in co-operation with the Chinese government to provide loving care and treatment for children with life-limiting conditions and life-threatening illnesses. No matter how small or how sick, we give every baby the love, care and medical attention they need. Our teams of medical staff create highly tailored care plans for each child, no two are the same.
The Butterfly Homes and Butterfly Wing
In 2010 we opened The Butterfly Home in Changsha for up to eighteen abandoned children with life-limiting and life-threatening illnesses – the first dedicated children’s palliative care hospice in China. Even in the face of real heartbreak, we ensure that our Home is a happy place, where children can be children, and are shown love and care everyday. Each child is evaluated and cared for in a way that is unique to them. We look with hope to the future for every child in our home, while making the very best of each and every today.
In 2013, using the model of care developed in Changsha, we founded another hospice in Nanjing, providing specialist nursing care for children who have palliative care needs, including those with complex illnesses and at end of life. We trained Chinese medical and nursing professionals to become independent in caring for these, and many more, children. This training was successfully completed in January 2015 and Nanjing Rainbow is now independently run by a Chinese organisation.
The Butterfly Wing is a five-year cooperative project with the orphanage of Changsha. We are training orphanage staff to deliver a high standard of holistic of care to fragile children. The Butterfly Wing is located on the medical floor of the orphanage and consists of six cots, a bedroom, day room, food preparation room and bathrooms. Six out of the eight nannies are provided by Butterfly Children’s Hospices, along with a housekeeper, the nurses and all food and equipment for the children.
A beacon for children’s palliative care in China
Our aim is to create a sustainable model of children’s palliative care services that can extended to different communities. This means partnering with hospitals, orphanages and communities to train and support holistic palliative care provision for children. We work in policy change and education as well as consultancy and developing training models for other hospices.
We are currently partnering with a number of hospitals in Changsha and Shanghai. Working in these hospitals is a learning process for all involved. We are learning about what kind of services we can offer to children and families. When we started the Butterfly Home, our aim was not just to care for abandoned children, but to work on keeping families and children together. In recent months we have taken a big step toward realising that ambition.
Achievements so far…
Since beginning our work in 2006 we have:
- Cared for 207 children in our Butterfly Homes, Butterfly Wing and in Chinese orphanages
- Funded and facilitated 29 life-changing surgeries for very sick children and babies
- Found loving adoptive families for 35 children in our care
In addition we have contributed to learning and development in children’s palliative care by:
- Organising and hosting four national conferences in China, with a fifth in the planning
- Translating education and training materials into Chinese
• Funding and producing the first educational video on paediatric palliative care in Chinese
- Advising the government on health care policy and paediatric palliative care standards
- Serving on the board of China Care for Life Association, the national body for palliative care in China.
- Working closely with the International Children’s Palliative Care Network (ICPCN) to develop online courses and training materials in Mandarin
Looking to the future
Future plans include developing model services in the community for families with life-limited children — such as bereavement support groups — and to support other orphanages to open Butterfly Homes. Alongside loving and caring for the babies and children in our Homes, we are fully committed to our long-term strategic goals of creating sustainable and scalable models of children’s palliative care – with the voice of the child, and family, if present, underpinning all actions taken.