Update on the Butterfly Project

Recently, we spoke with Professor Nick Embleton who updated us on The Butterfly Project and their most recent work.

‘Over the last 15 years Tiny Lives has supported research into the views and experiences of parents whose babies sadly died. This research expanded into further projects focusing on the situation where one baby from a multiple pregnancy (either a twin or triplet) sadly dies, and where one of more babies survived. These parents must somehow cope with the challenge of dealing with the grief and sadness for the baby (or babies) who died, whilst remaining happy and/or hopeful for the surviving baby. The loss of a baby from a multiple pregnancy can happen at any stage, sometimes there is a miscarriage early in the pregnancy, or an unexpected stillbirth of one twin. In some cases, both babies may have been born prematurely and receiving care on the neonatal unit, but one twin dies and the other survives. In this situation, parents must somehow cope with regular contact with the surviving baby on the same unit, whilst worrying about how to deal with the loss of the other twin. Occasionally this happens unexpectedly close to term as in the well-publicised recent case of Cristiano Ronaldo and his partner Georgina.’

‘Our work led us to develop the Butterfly concept, and we now place a Butterfly cot card with the name of the baby who died next to the surviving baby/ies. Using this work, we published academic research babies and created a series of short films with parents and staff talking about their experiences. We are extremely grateful to all those parents who felt able to share their painful experiences, and all the other parents who contributed to our research over the years. More recently, we have created an online learning course for health professionals. This explains the challenges and helps everyone better understand the challenges parents face, and how we can better support them. This course is highly emotional, and many will find it quite challenging. Whilst it is not aimed at parents themselves, or family and friends, we know many parents and families have viewed the course, but we would recommend everyone thinking carefully before viewing such sensitive material. The course is free to view and can be found here.

In the 6 months since the course was launched it has attracted over 600 learners from more than 80 countries worldwide.’

If you would like further information about the course, or research, please contact Tiny Lives who will pass your request to the research team led by Professor Nick Embleton.