The Butterfly Project
The Butterfly project now has it's own website! Click here
The Butterfly project developed out of qualitative research conducted In Newcastle with bereaved parents, and the staff that cared for them. Our initial studies explored the feelings and experiences of parents involved in decisions about the possible withdrawal of life-sustaining support for sick and vulnerable infants. That project shaped my clinical practice for the next 15 years, as well as my personal and professional identity.
It was in the first project that we noted that some of the parents had a multiple pregnancy, and had suffered the loss of one baby (as a miscarriage, stillbirth or neonatal death) but where one or more babies survived. This led to a second study with parents facing this unique challenge. Both these projects were generously funded by Tiny Lives. It was in this project that a parent suggested using a Butterfly cot card to acknowledge the baby who had died, and the Butterfly project was born in 2015. I am indebted to all the parents who took part in our research studies, workshops and co-production processes. Your generosity in sharing your painful stories of love, loss and short lives has made a difference to 1000s families around the world. Thank you!
A series of workshops with families led to the co-production of guidelines, teaching packs, and a film project with Reuben Abraham developed the project further. I met Millie around the same time and have collaborated with her since then. Millie established the Skye High Foundation in honour of her twin baby Skye who died; the SHF provide Butterfly cot cards and other resources to hospitals in the UK and US. On the Butterfly project website you can find free downloads, teaching video, guidelines for NICUs, links to support groups for parents and more.
We worked with the Skye High Foundation to launch an eLearning course in 2022 that is now freely available on the NHS Learning Hub. The Butterfly project has now been adopted in more than 100 NHS hospitals throughout the UK, and 100s hospitals worldwide. Further research and film projects were conducted in 2025. You can see findings from our studies along with parent stories and videos by following here.
The Butterfly project has been adopted by 100's hospitals worldwide - it is free for everyone. Contact us via the website if you would like more information, would like a speaker for conferences, study days, webinars etc. or are interested in research.
The Butterfly project developed out of qualitative research conducted In Newcastle with bereaved parents, and the staff that cared for them. Our initial studies explored the feelings and experiences of parents involved in decisions about the possible withdrawal of life-sustaining support for sick and vulnerable infants. That project shaped my clinical practice for the next 15 years, as well as my personal and professional identity.
It was in the first project that we noted that some of the parents had a multiple pregnancy, and had suffered the loss of one baby (as a miscarriage, stillbirth or neonatal death) but where one or more babies survived. This led to a second study with parents facing this unique challenge. Both these projects were generously funded by Tiny Lives. It was in this project that a parent suggested using a Butterfly cot card to acknowledge the baby who had died, and the Butterfly project was born in 2015. I am indebted to all the parents who took part in our research studies, workshops and co-production processes. Your generosity in sharing your painful stories of love, loss and short lives has made a difference to 1000s families around the world. Thank you!
A series of workshops with families led to the co-production of guidelines, teaching packs, and a film project with Reuben Abraham developed the project further. I met Millie around the same time and have collaborated with her since then. Millie established the Skye High Foundation in honour of her twin baby Skye who died; the SHF provide Butterfly cot cards and other resources to hospitals in the UK and US. On the Butterfly project website you can find free downloads, teaching video, guidelines for NICUs, links to support groups for parents and more.
We worked with the Skye High Foundation to launch an eLearning course in 2022 that is now freely available on the NHS Learning Hub. The Butterfly project has now been adopted in more than 100 NHS hospitals throughout the UK, and 100s hospitals worldwide. Further research and film projects were conducted in 2025. You can see findings from our studies along with parent stories and videos by following here.
The Butterfly project has been adopted by 100's hospitals worldwide - it is free for everyone. Contact us via the website if you would like more information, would like a speaker for conferences, study days, webinars etc. or are interested in research.
Welcome to the Butterfly Project - a short 5 minute introductory video
25 minute talk prepared for health professionals attending the Philippine Newborn Society (June 2026)
Our work is aimed at health professionals, and we do not provide parent or family support. If you are a parent or sibling and would like support please contact our partnering organisations including Skye High Foundation and Footprints Baby Loss.