We are a group of nurses, doctors and academics who have worked with parents over the last 10 years. Our initial research interests involved exploring the experiences of parents whose baby had died on a neonatal unit following an active decision to limit further intensive treatment. We also spoke to staff who cared for these babies. We heard from parents who had lost one baby from a multiple (twin) pregnancy and this helped develop our next research study. For this study we spoke with parents who had lost a baby, but still had at least one surviving baby from the same pregnancy (twin/triplet), and we also spoke to more healthcare staff. We published these studies in medical journals (see our resources page).
We wanted to use our knowledge to try and improve care for parents in the future, by improving staff knowledge, understanding and practice. During our workshops, one of the parents suggested that we use a Butterfly cot card to signify the twin status for the surviving baby and we first started using this in 2015. We have made these Butterfly cot cards freely available to ~300 hospitals worldwide including the UK, North, South and Central America. We have translated our guidelines into 5 other languages. Eight families (who had not been part of our original research) kindly agreed to take part in the film project (2016-17) around which this website is based.
Dr Nicholas Embleton. I am a Consultant Neonatal Pediatrician (qualified 1990), and help coordinate research programme in several areas of neonatal medicine, that include feeding & nutrition, and the Butterfly work with parents. You can read more about some of our other research on our linked website www.neonatalresearch.net
Professor Judith Rankin. I have a Personal Chair in maternal and perinatal epidemiology at Newcastle University, and help lead the qualitative research. Our studies first explored the experiences of parents following withdrawal of life-saving support from sick neonates, and then work on loss from a twin pregnancy that led to the Butterfly project.
Dr Ruth Graham. I am currently Associate Dean for teaching and learning, HASS, Newcastle University and led the original research studies that explored the feelings and experiences of parents whose baby had died following a decision to limit further life sustaining support. I then helped develop the research that led to the Butterfly project.
Dr Judy Richards. I worked as a researcher on the Butterfly project conducting interviews with the parents and then helped towards the producing the clinical guidelines, and the Butterfly film.
Sophie Proud. I am a newly qualified neonatal nurse. I was a twin born at 24 weeks gestation and took part in the filming for the Butterfly project, along with my mother Janette.
Dr Janet Berrington. I am a Consultant Neonatal Pediatrician and work as a consultant (attending) on the NICU in Newcastle. I help coordinate the neonatal research programme, helped make the Butterfly films and am Director of the Great North Neonatal Biobank www.ncl.ac.uk/biobanks/collections/ Further information on our research is available here www.neonatalresearch.net
Sister Sarah Stephenson. I am a senior sister and have worked on the neonatal unit for over 15 years during which time I have helped lead the development of the Butterfly project films and websites. I lead our NICU group looking at end of life care and palliative care for our babies.
Sister Claire Campbell. I am a neonatal sister and have worked on the neonatal unit for over 15 years during which time I established the buddy group for parents in collaboration with our charity - Tiny Lives. I was part of the research team that helped contact parents for the original interviews conducted by Judy and helped analyse and develop the key themes for the workshops that led to the development of the guidelines.
Senior Nurse Jane Couch. I have worked on the neonatal unit for over 10 years during which time I have helped Sarah to develop the Butterfly project films and websites, and our links with other hospitals in the UK. I am a member of the NICU group looking at end of life care and palliative care for our babies.
Staff Nurse Krystina Gosling. I have worked on the neonatal unit for the last 5 years during and help Sarah and Jane to develop the Butterfly project films and websites. I am a member of the NICU group looking at end of life care and palliative care for our babies, helping develop guidelines and reviewing our practice.
Dr Jenny Dixon. I am a neonatal specialist, and have worked on the NICU for the last 10 years. I take a lead role in palliative care and developmental follow up, and helped make the Butterfly films.
Dr Louise Hayes. I helped lead the Academic Health Science Network funded work that developed the Butterfly guidelines, information leaflets and powerpoint slides.