Alexa’s life was very short and her story had a tragic ending. She was only two and a half months old, when she was admitted for end-of-life care to the Butterfly Home. Her tiny body was fragile, and encumbered with drains, and post-operative wounds.
Her procedures and surgeries had been unsuccessful, and she had come to us when there was nothing else that could be done for her, for end-of-life care. How this little one tore at the hearts of everyone who saw her. So tiny and frail, so sad, and so little time left to pour love into her precious heart. Though she had spent most of her short life in an incubator, the nurses quickly saw that this wasn’t what she needed now. She needed to be loved, to be touched and to feel the heartbeat of another human.
For some of our new staff, Alexa was the smallest baby they had ever seen. At first they were afraid their hands would bruise or break this tiny hummingbird of a girl. Carefully, the nurses explained how to hold her and how to feed her safely. To see her nannies move from fear, to holding her close and singing was incredibly beautiful.
With quiet resolve, our staff put their fears aside and supported each other as they created a strong and loving circle around Alexa. Her time was close and she had experienced only hurt in her life so far. But for two precious days, she knew only love. We never got to know Alexa properly, we never got to see her smile, but we did the best we could do for her. For Alexa it was providing the warmth of another human perhaps for the first time in her brief life. Beautiful, painful, miraculous love – sometimes it’s hard, but children deserve no less.
Without the input of Butterfly Children’s Hospices providing children’s palliative care, Alexa would have died alone, in an incubator, not knowing the love of those around her and the importance of human touch.
A brief overview of what facilities Butterfly Children’s Hospices
In 2010 The Butterfly Home in Changsha was opened and cares for up to eighteen abandoned children with life-limiting and life-threatening illnesses – the first dedicated children’s palliative care hospice in China. In 2013, using the model of care developed in Changsha, Butterfly Children’s Hospices (BCH) 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. BCH 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. BCH 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.