Let’s talk: Challenging taboos on baby loss and post-mortems
Every October Baby Loss Awareness Week commemorates the lives of babies and raises awareness about pregnancy and baby loss. While this difficult subject is rarely spoken about in public, in recent years this has started to change. Last year MPs including Antoinette Sandbach and Will Quince, co-chairs of the All-Party Parliamentary Group on Baby Loss gave emotional accounts of their experiences with losing a baby as part of a Parliamentary debate.
In evidence submitted as part of the debate in 2016, parental consent rates for post-mortem were identified as an issue of concern. It was acknowledged that contemplating a post-mortem is often extremely difficult for grieving parents. The notion of post-mortem of a foetus or baby is often a hidden, taboo subject. Parents often find it difficult to give their consent for an examination when their baby dies. However, the importance of a post-mortem for identifying potential causes of death in cases of stillbirth and neonatal death was also highlighted.
Therefore, understanding how to support parents effectively around making decisions about post-mortem is important for reducing incidences of early-life loss.
The role of visual technology in post-mortem
A recent research project conducted by an interdisciplinary team at the University of Sheffield has sought to explore the emerging use of Magnetic Resonance Imaging (MRI) in post-mortem practice.
Funded by the Economic and Social Research Council, this project explores the ways in which MRI has the potential to transform the practice of traditional post-mortem, leading to the development of less invasive examination. The project focuses on exploring early-life loss (pre and neonatal death) which falls at the intersections of both the ‘start of’ and ‘end of’ life.
Drawing on in-depth interviews with professionals working in this area along with parents who have experienced the loss of a baby the aims of the project are twofold:
1. To understand how parents/ families who have experienced early-life loss feel about, and experience, the (MRI) post-mortem process
2. To explore the impact of this new technological application on professional practice, and relationships between professionals from different fields
The project team is currently in the final stages of data analysis and is beginning to disseminate early findings. Emerging findings have emphasized a number of key issues in relation to both parent and professional experience of post-mortem, offering fresh insight into this process. The importance of various care practices enacted by professionals working in the hospital is central to the findings of the research, along with the increasing value of MRI in the post-mortem process.
Consent is an issue which is often viewed as problematic by professionals and parents in the study, requiring further consideration be given perhaps to future staff training opportunities. Practices of memorialisation, for example making memory boxes, have been central not just in parents’ accounts, but also in those of the professionals who care for the babies during the post-mortem process.
Exhibition on baby loss
Some of the practices identified in the research will be explored as part of a forthcoming exhibition Remembering Baby: Life, Loss and Post-Mortem where visual images, physical objects and sound installations sensitively explore what happens when a baby dies, from both parental and professional perspectives.
The aim of the exhibition is to literally ‘lift the lid’ on the experience of early-life loss, and on the hidden process of post-mortem, situating this within the wider landscape of grief and memorialisation.
Each exhibit in Remembering Baby is informed directly by the findings of the project, and tells the story of life, loss and remembrance. These exhibits also uncover a range of hospital processes and care practices which are often hidden from public view. All of the installations seek to demystify a process which is often silent and hidden but which affects many of us and that is the experience of loss at the very start of life.
This free exhibition will be held at Protein Studios, Shoreditch, London between 3–14 November as part of the ESRC Festival of Social Science week. It will also run in Sheffield from December 5–14 at The Art House, Sheffield. A series of free workshops will also run alongside the exhibition.
The artwork in the exhibition has been produced collaboratively. The research project team of Dr Kate Reed (Principal Investigator), Dr Elspeth Whitby (Co-Investigator) and Dr Julie Ellis (Research Associate) from the University of Sheffield have worked with British Institute of Radiology artist in residence, Hugh Turvey, HonFRPS, to put together the exhibition. They have also collaborated with sound artist Justin Wiggan to develop his Life Echo work as part of the exhibition. Lee Simmons has produced the graphic design for the exhibition.
Dr Kate Reed, Reader in Medical Sociology, Department of Sociological Studies, University of Sheffield.