Dr Elspeth Whitby reflects on the changing shape of her clinical practice, after a research project and the curation of an exhibition which has opened up new ways to engage the public with her work and medical imaging.
This month I am involved in the launch of a new exhibition, Remembering Baby: Life, Loss and Post-Mortem which opens in London (3-14 November 2017) and then in Sheffield (5-14 December 2017). The exhibition is a result of the “‘End of’ or ‘Start of’ Life’” research project which explores how Magnetic Resonance Imaging (or MRI) techniques are starting to be applied to post-mortem practice – including pregnancy loss and neonatal death. This is an important initiative as it is a technique which is less invasive and arguably less distressing for all involved.
This interdisciplinary collaboration has provided an insight into aspects of my work as a radiologist that I would never normally be aware of, and it has highlighted the importance of understanding parents’ needs at a time when they may be anxious, upset, stressed, concerned and affected by a whole range of emotions. I have learnt how ‘little’ things mean so much to families who experience baby loss, and that these can have a huge impact on how they live with their child’s death.
Making visible the often hidden care practices enacted by health professionals who look after babies and their families following a foetal or neonatal death, is a key aim of the Remembering Baby exhibition. Our research team has worked in collaboration with the BIR artist in residence, Hugh Turvey and sound artist Justin Wiggan, to create exhibits related to early-life loss.
Remembering Baby seeks to make these encounters more visible and features a collection of visual images, physical objects and sound installations that sensitively explore what happens when a baby dies, from both parental and professional perspectives. By talking with Hugh about our study, he has been able to interpret and creatively represent some key themes and findings from the research – including MRI’s role in the developing landscape of minimally invasive post-mortem for babies. In the pieces there is also a broader focus on care practices and memorialisation.
As part of the research project we ran a Lasting Impressions workshop. We invited bereaved parents and relatives from the local area to bring along items that were precious to them and related to their baby. The individuals who came were amazing. They talked very openly to us and to each other about their babies and the memory objects they had bought. Guided by Hugh the participants made paper impressions and rubbings of their items and donated their work to us for the exhibition. Those that came to the workshop were at different stages of their bereavement – for some the loss was very recent, for others it was many years ago – and they all had very different experiences. There was not a single person in the room who did not have tears in their eyes at some point during the workshop, but they were not all sad tears.
It made me realise that as professionals we have improved greatly over the years in terms of how we include families in decision-making and with regard to the support we provide, but we can still do more. During the workshop a parent shared how one item held sad memories for her because it was associated with seeing a spot of blood on her child’s Babygro as they were preparing for the memorial service. This is something I will never forget, and something that could have been avoided. I now look at things in detail beyond the medical side, and consider if there is there anything more we can do to ensure that we avoid additional sadness however small it seems.
In my blog The Role of a Radiologist when a Baby Dies I mentioned the difference between what I understood by the question “what happens to my baby?” and what the parent really wanted to know. We now have leaflets in all our patient packs explaining who looks after the baby, who dresses it, cares for it and where. The midwives have the information for parents when they ask and some of the uncertainties have been removed.
Volunteers have been linked with professionals and support groups so that the items they create meet the needs of all these groups.
Where next? We plan to run educational events for health professionals and support groups, and to continue to work in collaboration and extend our work to looking at consent.
Throughout my career I have been taught that experience is the most important learning tool. This work has highlighted that it is not just the medical experience but my journey with each individual patient, what their needs are and what they can teach me for my future interactions with other patients and relatives.
This project is funded by the Economic and Social Research Council (ESRC) and is a close collaboration with colleagues in Sociological Studies at the University of Sheffield – Kate Reed (project lead) and Julie Ellis (researcher)
Images courtesy of Hugh Turvey
Dr Elspeth Whitby is a senior lecturer at the University of Sheffield and an honorary consultant at Sheffield teaching Hospitals NHS Foundation trust. Her clinical and research interests are based around MR Imaging of the foetus and neonate. She provides a national service for foetal MRI and is an integral part of the team at Sheffield Children’s hospital, which has set up the world’s first clinical service for minimally invasive autopsy for the foetal and neonatal age group. Her research provides the necessary data to assess the value of new MRI techniques and then to support the transitions from research to service. The multidisciplinary nature of her more recent work is changing her as well as influencing clinical practice.
She was the ex-Vice President for Education at the BIR. Whilst in this role Elspeth helped to improve the educational scope and methods of delivery of educational events for all BIR members.