Language

In identifying what would be supportive, what is said and how it is said is of major significance. Just as I argue that miscarriage should be normalised in discussion, society (with a lead from the medical profession) needs to address the terms used. I am very aware that not every loss is of a much longed for baby and so simply referring to ‘losing a baby’ may not be universally helpful. Some may not identify their loss as being of a baby. Others who ‘lose’ a baby may have chosen to terminate their pregnancy. Assumptions must where possible be avoided, and the language used appropriate for each individual. However, part of the reasoning behind choosing twenty weeks gestation as the limit for my research was the widely accepted medical practice that thereafter the term baby was used. Research must be conducted to ascertain what terms and

descriptions might prove helpful and supportive as it is clear from my study that the current descriptors such as ‘products of conception’ or ‘bundle of cells’

which may have undergone a ‘spontaneous abortion’ or were requiring

‘evacuation’ or an ‘abortion’ or a ‘D&C’ were causing additional upset to the women who were losing their baby.

The women in my study have indicated that such language can be less than helpful and, at times, very upsetting and hurtful. It was quite clear on reading my interview transcripts that terminology is significant, and that inappropriate phraseology caused deep and lasting hurt. F6 has feelings of guilt that her baby was (she presumed) disposed of as medical waste, and she believes something more should have been done with the baby’s remains. Terminology is mentioned frequently by F11. A glib comment by a junior doctor referring to her baby as a

‘product of conception’ has remained with her. She also refers to other people assuming she was having an abortion which, she says, “made me think I had done it to myself.” Inappropriate descriptions are, therefore, adding to the hurt and loss at a time of great sensitivity, while at the same time leaving a long-lasting impression.

Another participant (F5), speaks about terminology in a very pertinent way. She was, and still is, a nurse in an operating theatre where an ‘evac’ would be carried out. This, she describes as the “evacuation of products of conception”

and is aware that some of her colleagues would refer to this procedure as an

‘abortion’ or ‘termination’. Coming from a position of understanding the realities of those who care for patients did not diminish the impact of such words and phrases on her, and yet by virtue of her profession she was complicit in their use before, between and after her seven miscarriages.

Reflecting on terminology, I cannot improve on F11’s words, “I think terminology has a lot to answer for.”⁵⁷ She goes on to add, “I think if you use that

terminology then you feel you are guilty.” Addressing how miscarriages, associated medical procedures and what is lost by miscarriage are referred to would help prevent the compounding of guilt that some women might feel. More sensitive use of language would also promote a culture of support by recognising that for those who have longed for a baby, it was their baby that has been lost.

I am conscious that the ethical approval limiting my research to those who had experienced an early miscarriage to at least ten years previously may leave my conclusions open to the criticism that they may only be relevant to a particular period in time, and that current practice may be quite different. With respect to language, however, little has changed, as is evident from an on-line article by Anna Medaris Miller, senior health editor at U.S. News, published in 2018. Miller quotes Dr Zev Williams, an obstetrics and gynaecology consultant, who

comments that “There are so many terms we use that are confusing to patients, and even to clinicians” (2018, para 4). Miller goes on to say that “miscarriage is one area in which unfortunate language choices can reinforce women’s shame and isolation” (para 5). She also highlights the unhelpful description of the phrase ‘spontaneous abortion’ which I have already mentioned. Other terms

57 On learning that her baby had died F11 was admitted to hospital, where a doctor had used the term ‘products of conception’ and a nurse, in speaking to a colleague, referred to her being in hospital for an ‘abortion’.

such as ‘pregnancy failure’ she notes as being particularly hurtful (para 9) as it conveys a sense of the mother having done something wrong and, by inference, apportions blame. The term D&C is more acceptable to those requiring a

medical intervention and is preferred, according to Miller, to the more modern description of ‘uterine aspiration’ or ‘uterine evacuation’ (para 11). At the end of her article Miller quotes one mother who had experienced early pregnancy loss who said “I think the language is making us feel guilt and shame and more isolated and alone.”⁵⁸ This recent evidence supports my view that the reported experiences of my interviewees are not isolated. This is further evidenced by a study reported in the Nursing Times (Stephenson 2020, para 1-26) and

highlighted in the Guardian Newspaper (15^th January, 2020) which, in response, published abbreviated accounts of their readers’ experience of miscarriage (“Readers on the pain of Miscarriage”). These published accounts highlight that much still requires to be done to support those who have experienced early miscarriage. Lack of support and inappropriate terminology feature strongly.

Nicole (London) wrote that “while it was a ‘bundle of cells’ to doctors and ‘not a viable pregnancy’ it was a dream to be pregnant.” Eleanor (Northhampshire) says that the health professionals who dealt with her were “clearly ill equipped to cope with any mental health implications.” Bibi (Austria) describes how “it didn’t matter if my kid was technically not a human being but just a lump of cells – it was my kid, and it was gone.” Language matters.

Admittedly, those whose stories are noted in the Guardian may not be representative. They submitted their accounts and wanted to share their experiences. However, these experiences echo those in my study. Eleanor (Northhampshire) says her family “struggled to understand the impact it had on me.” Nicole (London) thinks “it is difficult for people to understand what it means to lose a pregnancy early on.” Anonymous writes “friends and family haven’t really known what to say and had little understanding of the trauma I was suffering. Bibi (Austria) relates that everyone kept telling her how it would be okay and that she would get pregnant again. She says it was like being told “who cares if you lost

58 Quotation from an interview with Julie Davidson who describes her own experience and is author of the book From Conception to Confusion.

your child? There would be others.” As has been seen in this thesis, well-meaning advice can still be very hurtful. Another anonymous contributor says such advice actually hurt the most; for example, “at least you know you can get pregnant”

and, “my friend had seven miscarriages (as if it’s a competition).” These accounts not only provide an up-to-date echo of the findings of my own research, they also show that the experiences I have reported are not restricted to a limited geographical area.

A second anonymous reader writes “My relationship broke down because of what happened and I am extremely isolated because my friends are at a loss to know how to support me. It doesn’t seem to be a thing that anyone speaks about.” Kat (Stockton–on-Tees), while noting that she required no aftercare or support, describes the insensitivity of receiving a twelve week ultrasound letter, a phone call from the midwife to book another appointment and an invitation to book a cervical smear (which could not be done until at least twelve weeks post pregnancy), all after her miscarriage. Only one of the respondents printed in the Guardian (Liz, Shoreham-on-Sea) records that her family provided a lot of help.

However, she added that mental health support was almost non-existent. Such experiences parallel those reported to me by the women in my research study.

The heading of the article in the Guardian serves not only as a title for what was to follow but to convey to the rest of society a sense of the significance of what some may feel, “In my head I was already a mum and then suddenly I wasn’t.” It is essential, therefore, that we acknowledge and address such feelings. We must confront this silence surrounding miscarriage. This thesis seeks to do just that.

The Nursing Times article which generated the response in the Guardian referred to research involving more than 650 women who had experienced miscarriage or ectopic pregnancy, and reported that nearly 30% had suffered post-traumatic stress while a further quarter experienced moderate to severe anxiety, and one in ten had moderate to severe depression.⁵⁹ Professor Tom Bourne, one of the

59 The paper to be published by the American Journal of Obstetrics and Gynaecology reports findings from a questionnaire survey involving 537 women who had suffered a miscarriage

lead authors, comments, “This research suggested the loss of a longed-for child can leave a lasting legacy and result in a woman still suffering post-traumatic stress nearly a year after her pregnancy loss.” One of the co-authors, Jessica Farren points out: “early pregnancy losses are still shrouded in secrecy, with very little acknowledgment of how distressing and profound an event they are.”

In discussing the implications of their work, the authors of the research note:

The fact that such a high proportion of women experience symptoms that are suggestive of PTSD and that these symptoms persist over time is important. It is recognised that PTSD in other contexts can have a significant impact on work, social interaction, healthcare utilization, and risks in future pregnancies. Given the annual incidences of miscarriage and ectopic pregnancy (which may rise further if the trend towards later childbearing continues), this points to a significant public health issue. (Farren, Jalmbrant, Falconieri, Mitchell-Jones, Bobdiwala, Al-Memar, Tapp, Van

Calster, Wynants, Timmerman, and Bourne 2019, 1.e.11)

The need for support must not continue to be overlooked. Commenting, Jane Brown, chief executive of the pregnancy loss charity Tommy’s, said the research showed the need for urgent improvements in support. With this I would concur as my own study has identified a similar lack of support.