It is estimated that there are 21 million children worldwide who are in need of palliative care. 4.5 million of those children are in China.
Butterfly Children’s Hospices charity was 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 every day. Each child is assessed 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 can care for 6 children in 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
We have created a sustainable model of children’s palliative care services that can be adapted and 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 learning about what kind of support we can offer to very sick children and their 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
- Supported the recovery and subsequent adoption of 35 children
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 the 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 models of additional services for families with life-limited children – including bereavement support – in hospitals and the community, as well as supporting 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.