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.