The Butterfly Project

A message from our friends, Dr Nicholas Embleton, Sister Sarah Stephenson and Dr Janet Berrington.

We are looking for help in making a film with parents who have suffered the loss of a baby from a multiple (twin, triplet etc.) pregnancy: the Butterfly Project

Hearing what parents have to say

We are the neonatal research team based on ward 35 at the RVI, and have been carrying out research with parents to better understand the complex emotions suffered when a baby dies. This is an extremely emotional and sensitive issue and we would like to apologise to anyone who feels upset reading about this, even if you have not been affected personally. We think it is vital that we improve our understanding of what it feels like for parents so we can better educate staff, and help parents, siblings and families in the future.

The Butterfly project

We know emotional and traumatic issues arise for lots of, if not all, parents who have had babies on SCBU, but at present we are focusing on this Butterfly Project. With funding support from Tiny Lives we spoke to parents (and staff) and then analysed the main themes. This work has been published in medical journals and presented at conferences around the UK. We are extremely grateful to the parents who helped us, and the parents who considered the study but felt unable to take part at that stage. We are also indebted to Tiny Lives and the thousands of people who have given up their time and raised funds to support our research.

In addition to publishing our findings in medical journals we have been working to produce guidelines and teaching materials for staff, as well as developing the idea of using a Butterfly cot card on the cot of any surviving babies so everyone remembers what has happened. We have been using these on ward 35 SCBU for over a year and find they have really helped.

Making a film

Now, we plan to make a short film with parents and staff. The topics we cover will be the same as in our existing guidelines, but we think a film will be a better way of explaining the complex emotions to staff. The film would be used to teach staff at the RVI, but we would also share the film with other hospitals.

We plan to film around 5-6 sets of parents, and a few staff members. It is possible that more than 5-6 parents come forward – in that case we may not be able to film everyone. However, we would be keen to hear from as many parents as possible because there may be other ideas or feedback we can learn from.

What is involved in taking part in a film?

 We are working with an experienced film producer with whom we’ve spoken to in great detail. This means the small film team understands the complex emotions that may arise. The filming will be conducted with great sensitivity, and will involve an initial meeting or telephone call with the film-maker (Reuben) so as to appreciate their story. This will allow the families to feel comfortable about the idea of being filmed. If parents don’t wish to proceed that is fine.

The actual filming would include interviews and some cutaways (activity  shots). There is only one Film Director (Reuben) and sometimes someone who helps with lighting. Both parents can be interviewed together or individually as wished, and any children can also be present if parents want. It can be filmed at home so families are comfortable in their own environment, or at a studio in Gateshead if that’s easier. We can cover travel costs and help contribute to costs of childcare if that is needed.

Where do I found out more?

You can read more about the Butterfly project here

You can follow links to listen to us speaking about the project on BBC radio, and hear and read the stories of parents. If you would like to be included on the list of people we invite to join the project please click the link below. We can then email you more information about what would be involved before any decision is made.—film.html

If you want to tell us something but don’t want to be involved, and you want to remain anonymous, you can still submit a form but simply leave out any contact information. Thank you for your help

Dr Nicholas Embleton, Sister Sarah Stephenson, Dr Janet Berrington.