Thank you for your interest in our project. We will be using this blog to keep you up-to-date with our research, and to reflect on issues relevant to our research. We will also be publishing submissions from people who have been affected by pregnancy loss.
If you would like to contribute your own experience, we would love to hear from you! Please see the Share Your Experiences page for more information.
Please feel free to comment on the posts published here, but do not be concerned if your comment does not appear straight away; all comments are moderated before publication.
It’s been an exciting couple of months for the Death before Birth project – specifically on the linguistics front for this update! At the end of May, we (Jeannette and Sarah) presented some overall findings from the linguistic analysis at the Hay Festival. We were thrilled to have a large and very engaged audience, with a little over eighty people coming to the talk and some very interesting and thought-provoking comments and questions at the end.
The talk focused on four main areas, with some key points highlighted here.
1. What does it do to you as an individual?
Here, we focused on how the language used by people who have gone through pregnancy loss often highlights its status as a deeply ’embodied’ experience, involving an emptiness which is not only emotional, but also physical. Participants in our research spoke of how this physical emptiness led them to feel that they had lost a part of themselves, and noted that this embodied nature of the loss differentiates pregnancy loss from other types of bereavement. Participants talked about the loss making them feel that they occupied a different world or a different reality, and many participants noted that they became ‘a different person’ through the experience.
2. How do you perceive and remember what is lost?
Many participants expressed ideas that demonstrated that, on some level, their baby was still alive for them. This fed into their decisions surrounding post-mortem and burial/cremation, with one parent giving their stillborn child a soft toy and a photo to accompany him to the post-mortem, and many parents expressing a desire that their babies be buried with other babies to keep them company. Midwives and caregivers often support and encourage these choices, which is appreciated by the bereaved.
In terms of remembering and memorialising the loss, participants often draw on images and symbols that are used by the support organisations and more widely in society, such as candles, butterflies, or angel wings. However, many participants also engage with more personal and individual images that speak more closely to their own experience.
One of the key differences between pregnancy loss and other types of loss is that it is a future life that is being grieved. In adult grief, the bereaved can often draw on a lifetime of memories to support them through the grieving process. However, in the case of pregnancy loss, the grief is directed towards a life not yet lived, memories that have not yet been formed except in the hopes and expectations that may begin from the moment pregnancy is confirmed.
3. How do others react?
We had a number of examples of good care and support in our data, where the bereaved felt that their loss was acknowledged and validated. However, there were also occasions where they were made to feel rushed in their decisions, or where their pain was minimised or unacknowledged. Many participants reported experiencing awkwardness or avoidance from those around them. From a healthcare point of view, too, some participants mentioned that they did not feel that they had all the information that would have helped them through their loss, notably around what to expect from the process. We will be using these accounts to suggest future improvements to care following pregnancy loss.
4. How can others help?
From our research, we were able to make a number of suggestions for how best to support an individual going through a pregnancy loss. We will be expanding on these suggestions in a number of publications and other research outputs over the coming weeks and months, but as a very brief summary:
Acknowledgement and recognition of the loss is crucial, along with an awareness that for some parents, it may have been far more than the loss of a baby, but the loss of a future that is no longer available to them.
It is important to just be there, and give the bereaved time and space. Sometimes this is more important than trying to ‘say the right thing’. However, in talking about the loss, anything that opens a conversation about the baby is likely to be welcomed. Many participants appreciated being asked about the birth, or about what the baby looked like. Using the baby’s name, and keeping the memory of the baby alive, are also often welcomed.
Recognise that this is an intense and often life-changing experience. Notably, this is not something that the bereaved are likely to ‘get over’, instead learning to manage and live with a grief which will always be present on some level.
Although we have made these suggestions, the best advice is still to get in touch, be there for someone going through a pregnancy loss, and say something that acknowledges and validates the baby, the experiences of the bereaved, and their emotions surrounding it.
We are currently preparing an article for The Conversation looking at communication around pregnancy loss, and we will share the link here and on our Twitter feed when this is ready.
Earlier this month, Louise Austin presented a paper arising from research conducted on the Death before Birth project at the Socio-Legal Studies Association’s annual conference at Leeds University. Louise is a PhD candidate in Law at the Centre for Health, Law, and Society and Centre for Ethics in Medicine, University of Bristol, and has provided invaluable support to the project.
The paper, co-written with Sheelagh McGuinness, is provisionally titled ‘Medical Treatment, Miscarriages and Consent’. It explores a legislative gap concerning information provision and consent for disposal of pregnancy remains pre-24 weeks’ gestation and examines how case law could be used to overcome that gap. As Louise explains in her blog post on the SLSA website:
The paper arose out of research conducted as part of the Death Before Birth (DBB) Project, which examined the extent to which Human Tissue Authority (HTA) guidance on disposal of pregnancy remains has been incorporated into hospital policies. The guidance sets out different options for disposing of pregnancy remains and requires that women are informed of all options before their consent to disposal is sought. However, the DBB research revealed a wide variation between Hospital Trusts as to which options were offered, with women who miscarried at home often being excluded from information about disposal even when they had sought medical advice.
On Friday the 13th of April 2018 Karolina and Sheelagh joined the Bereavement Midwife Forum in St Mary’s Hospital in London. The forum was established by bereavement midwife Jane Scott in 2009; it is organised twice a year and offers an opportunity for bereavement midwives to discuss ways of improving bereavement care following pregnancy loss in England, from solutions to emerging problems to sharing tips and experiences.
Karolina focused on issues of particular interest to bereavement midwives with reference to the HTA Guidance recommendations. For instance, when discussing disposal options of pregnancy remains, in addition to offering hospital-arranged burial or cremation, it might be worthwhile to provide a leaflet explaining other options, such as private arrangements, burial outside the cemetery grounds or sensitive incineration. Karolina also talked about practical aspects of funeral arrangements, such as facilitating parental attendance at shared funeral services, explaining costs to parents, and availability of ashes with modern cremation technologies.
The wintry weather might not have been on our side, but the Death Before Birth Stakeholder Workshop on the 28th of February 2018 was a successful exchange of perspectives and insights between all the participants.
With over 30 participants, from medical doctors, midwives, and funerary industry professionals, to representatives of regulatory bodies and charities supporting people who have experienced pregnancy loss, as well as people who have themselves lost a pregnancy to miscarriage, termination, or stillbirth, the workshop brought together a variety of perspectives to discuss the complex issue of pregnancy loss.
The workshop began with a panel on experiences, where three women who have had experiences of miscarriage, termination and stillbirth eloquently told their stories, illustrating the multidimensionality and intricacy of each case. They highlighted key issues that concerned them about the process of decision- and choice-making with regards to the disposal of fetal remains and the cremation or burial of stillborn children.
The DBB research team followed with an update of the project’s progress and short introductions to the breakout sessions: one on communication, run by Jeannette Littlemore, and another on decision-making, run by Karolina Kuberska and Meera Burgess.
The breakout session on communication focused on the metaphors people use to talk about the experience of pregnancy loss – and how looking at these metaphors can give us insights into such experiences. The session on decision-making highlighted possible conflicts of priorities involved in offering bereavement care to people who have experienced pregnancy loss.
The final panel, “Professional support and policy: Actions for change”, was a discussion by Ruth Bender-Atik of the Miscarriage Association, Ross Jones from Sands, Brendan Day of the Federation of Burial and Cremation Authorities, and Adam Whittaker of the Human Tissue Authority. The panellists offered their reflections on issues raised in the workshop, as well as indicating possible directions for the future of bereavement care pathways following pregnancy loss.
The day provided a good opportunity for us to share our perspectives on this important issue.
The Death Before Birth project team is organising a one-day event on Wednesday the 28th of February 2018.
We will share some of our initial findings and talk to our partner organisations (the Human Tissue Authority, the Miscarriage Association, Antenatal Results and Choices, Sands) about possible applications of our findings as well as about future directions for policy and practice. The workshop will bring together people who have experienced different kinds of pregnancy losses as well as those who support them professionally in different contexts, such as bereavement midwives, funerary industry professionals, and support workers. Among other things, we hope to talk about challenges of losing pregnancy as well as providing care during and after such an event and about the principles of good communication.
We are very much looking forward to this event!
Would you like to join us? There are still a few places left! Find out more and register here: https://goo.gl/TqHThi