February 2021 – Preemie Org Highlight

Organization:  Butterfly project
Founder: Professor Nicholas Embleton
Established: 2016
Outreach: Worldwide
Website:  www.neonatalbutterflyproject.org


The Butterfly Project’s qualitative work and educational projects have focused on baby loss (including miscarriage, stillbirth and neonatal death) in the context of multiple pregnancy (twins, triplets etc.) and where one or more babies survive.

Founder, Professor Nicholas Embleton shares, “I have worked as a senior neonatal consultant (physician) for 20 years on a large NICU in the UK and over the last 10 years have carried out a series of qualitative studies with parents seeking to better understand their feelings and experiences, as well as better understanding those perspectives in health professionals (including myself). Our first studies aimed to understand what it felt like to be a parent involved in decision making around discontinuation of active intensive care on a NICU. This project led onto exploring themes that emerged in parents of twins & triplets, where one baby died, and another baby survived. This was an area I had always been aware of, but hadn’t previously been researched or developed. Our work focused on parents caring for a surviving co-twin baby on a NICU, but some parents had experienced in-utero loss of one baby. We developed our findings at workshops with parents and this led to creation of our Butterfly cot card. We further developed our understanding by co-creating a film based website with parents that is freely available, and we have partnered with a charity “The Skye High Foundation” set up by a mother experiencing co-twin-loss who also came up with the Butterfly idea. We now work together to raise the profile of this challenging issue.”

On our website www.neonatalbutterflyproject.org there are free-to-download guidelines and information sheets for NICUs translated into 10 different languages. There are also pages with advice/tips for families and friends who are supporting parents, and parents stories. The films/video clips are free to use, and can be used by teachers in higher education settings e.g. seminars with nursing, medical and other students. We do not require any registration but ask that people register with their email so we can keep in touch and update. We are interested in feedback which can be given via the contact form on the website.


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