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 Christina for getting in touch with her experience. Thank you, Christina, and we wish you all the best.
It took me 5 years to get pregnant and when I found out I was having twins I was so excited! Everything was going great until week 14 when twin A started to gather fluid on the back of her neck, we were told she has Turners syndrome, and she has 20% chance of survival but if she did survive she would have some medical issues but she would live a normal life. I had to go in weekly for check ups and week 15 everything was still going good and that’s when we found out they were girls. I paid for a special ultrasound to get a 3d and stuffed animal with their heart beats. That’s when I heard those words..I don’t see a heart beat….then they measured twin A, Noelle and she stopped growing at 16.5 weeks..that is the day that a part of my heart died. The hardest part was I had to carry her until her twin Nova decided when it was time. The positive side is I got to see Noelle Weekly but at the same time it was a reminder that she was gone. When I delivered I was told that there were no traces of Noelle left (they said she came out with my water which happened on the toilet that I flushed) but one year later I got my surgical note and it noted that she was there she was deformed but there.. I could of had my baby cremated.
I hate when people tells me these phases
‘Be happy you got Nova still’
‘Everything happens for a reason’
And I hate when people try to tell me that Nova is living in Noelle’s shadow..which is not true, we don’t celebrate there birthdays on the have day we consider noelle birthday the day she passed.
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.
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.