We spent a very rewarding day on Saturday sharing our findings with people at New Street Station in Birmingham on Saturday. This was part of an interactive exhibition of research that is being conducted at the University of Birmingham. We were co-exhibitors with Helen Williams, who is doing valuable work on the experiences of fathers following pregnancy loss. We spoke to a number of healthcare workers, including midwives, as well as people who had experienced pregnancy loss. We hope the event was informative. It certainly was for us.
Man performing the ‘Sky Dancing Rope Game’ or Chakhen Tagshur, ‘Sliding down the rope like a bird’, as part of the New Year ceremonies at the Potala Palace, Lhasa, Tibet, 13th February 1937. Photographer: Dasang Damdul Tsarong from the collection of Frederick Spencer Chapman at the Pitt Rivers Museum. Location and Date: Lhasa, Tibet, 1937. Copyright Pitt Rivers Museum, University of Oxford (1998.131.541)
A couple of weeks ago, our team member Karolina Kuberska attended the annual Association of Social Anthropologists of the UK and Commonwealth (ASA) conference. This year, the conference was held in the beautiful city of Oxford.
The theme of the conference focused on the meaning of imagination in the way people order their social worlds and how that impacts the way anthropology is understood as a discipline. With 740 academics attending, with 82 panels and 13 labs spanning all four fields and beyond the discipline, it has been the largest ASA conference to-date.
Karolina presented in a panel “The creative birthing body” run by Cassandra Yuill and Maria Paula Prates. Karolina presented a paper entitled “My son was born sleeping”: giving birth to death as a valuable experience that looked at the way in which sometimes the narratives of labour constitute a cherished, important part of the stillborn baby’s biography. You can read the abstract of the paper below:
Stillbirths and late miscarriages are slowly attracting increasing attention of the British media and the politicians, and the general public as the result, however, they are largely framed through the extreme grief and mental health issues that accompany them. Many people find it surprising that a fetus/baby diagnosed with IUD, intrauterine death, has to be birthed. Even more are shocked to find out that vaginal labour, rather than caesarean sections, is encouraged by medical professionals. As bereavement care following pregnancy loss focuses on giving parents a sense of control and acknowledging the baby, the undeniability of childbirth fits this framework well. In this paper I would like to explore experiences of women whose childbirth resulted in anticipated late miscarriage or stillbirth. Although these birth experiences do not lead to live, healthy babies, they are crucial in the women’s narratives of the relationship with the baby, validating these women’s sense of motherhood and making the baby’s existence more tangible to others. Using interviews with women in England who have experiences stillbirth or late miscarriage, I would like to explore the significance they attach to the labour process, including physical pain and temporality, in the construction of familial bonds with their babies.
The paper was well received and Karolina was asked many interesting questions.
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.
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.
As part of this blog, we invite readers who have experienced pregnancy loss or stillbirth to share their stories with us. You can submit your story on our Share Your Experiences page.
We’re very grateful to Sarah for getting in touch with her experience. Thank you, Sarah, and we wish you all the best.
I held the pregnancy sac in my hand, alone in my bathroom at home, and stared at it for a while. It was on a piece of toilet paper, had come out as I wiped away this seemingly never ending flow of blood after a visit to the loo. It was my fourth day of bleeding. I was miscarrying at seven weeks, a number that is so small that I almost feel the need to justify it. It took me a while to tell people, to explain to close colleagues why I’d had some off work, or to tell friends the real reason why I wasn’t my usual, happy self. In my experience, when you tell people you’ve miscarried the first thing everyone asks is ‘How far along were you?’. Probably because they don’t know what else to say rather than because of a real desire to know details.
But to me it feels like they’re quantifying my grief, and as though seven is too small a number, too insignificant for it to be valid. And so I try and highlight my sadness by giving more details. Telling the story of nine years spent trying to conceive naturally. Of how our amazing four year old son was conceived after fertility treatment and how we always knew he’d be an only child as we couldn’t put ourselves through that emotional or financial burden a second time. But that didn’t stop us from wanting a sibling for him. Of how this unexpected pregnancy felt like a miracle, how it was a miracle, how it gave us back those dreams, hopes and desires of being parents for a second time. But no-one, besides my husband and I, can really understand those nine years of pain and longing, the unexpected delight, and the crushing disappointment of holding what should’ve become my baby in my hand, on a piece of toilet paper, alone in my bathroom as my husband was at the park with our son.
No medical professional had used the ‘m’ word yet. You see, seven weeks is such a small and insignificant number that I hadn’t yet seen a midwife for my ‘booking in’ appointment. I didn’t even come under our early pregnancy unit and instead had to walk into A&E and tell them I was pregnant and bleeding after a tearful phone call to my GP. It was so early into the pregnancy that my scan was inconclusive and so I was sent home to wait with another appointment set for two weeks time, and a reassurance that they could clearly see a tiny embryo in the sac and so maybe I’d got my dates wrong, that lots of women had bleeding in early pregnancy and so I shouldn’t worry. I had been bleeding for 24 hours by this point, I knew my dates weren’t wrong, a 2mm embryo with no heartbeat is not what should’ve been on that scan photo. My baby was dead, maybe its heart never started to beat in the first place, and I was sent away with no information, was forced to Google ‘what to expect during a miscarriage’ and then sit at home and wait it out.
And so I wasn’t given choices, no options of how to dispose of the remains of my baby, no invitation to a memorial ceremony like the ones I know other people have attended. No one even knew I was pregnant because of this silly, cultural tradition of keeping it secret for the first 12 weeks ‘just in case’. Miscarriage is very common, you know, one in every four pregnancies end like this so best not tell anyone you’re pregnant until you’re past the first trimester. To me, the discourses of miscarriage seem intended to normalise something that is far from normal for the women who experience it. These discourses are so at odds to the trauma and grief and physical pain and fear that I felt when alone in my bathroom on that day, or in the days before and the weeks and months after. Nobody talks about pregnancy loss so it feels like a dirty secret, like I should just be able to pick myself up, dust myself down, and carry on as if this never happened. So I flushed the remains of my baby down the toilet, sobbed in a heap on the floor for around 40 minutes, and still question whether that was the right way to say goodbye.