Pregnancy Loss Language

Supported by the AHRC Institution: University College London Department: English Language and Literature  Investigators: Beth Malory, Louise Nuttall (University of Nottingham) Researcher: Eloise Parr (University of Birmingham) Partners: Sands, Tommy's and UCL Period: December 2023 - August 2025

A Note on Language - Beth Malory

Before we could begin this research, we had to decide what to call it. We set out to show how fraught it can be to choose words to refer to the experience of a baby dying during pregnancy. It was therefore fitting, in a way, that it proved so difficult to find a project name that nobody would object to. Whilst baby loss is helpful for many, because it encompasses a broad range of experiences, including neonatal and infant death, it was not appropriate here, where our focus was on losses during pregnancy. Baby loss would also have implied that we expect all losses during pregnancy to be experienced as a baby dying. As this report highlights, this appears to be the most common way of conceptualising pregnancy loss, but it is certainly not the only one, and we did not want to choose a name that might exclude anyone from taking part.

Other options which are both widely recognisable and encompass all experiences of loss during pregnancy are scarce. I therefore chose pregnancy loss despite full awareness of its drawbacks (which are discussed at length in the EStELC Project report), because it was and is the best (and only) option available in the UK in 2024. I want to state clearly, though, that pregnancy loss is used throughout, not with the intention of implying the loss of a pregnancy, but a loss during pregnancy.

The challenge of naming this project echoed through to the writing of its final reports, where choices likewise needed to be made about how to refer to experiences of pregnancy loss. Again, it would have been impossible to find words that nobody would object to or find difficult, so in an effort to be as inclusive as possible, I have used baby throughout. This reflects the preferences of most EStELC lived experience participants, many of whom found language which dehumanised their babies, such as fetus or remains, very painful. For anyone who does not find the word baby helpful in this context, this may be difficult, and I am truly sorry for that. It was easier to avoid using other potentially triggering terms, and it is for this reason that the word parent is not used, and nowhere in this report do I presuppose that only women experience, or are affected by, pregnancy loss. I have therefore used participants and co-producers to refer to those who contributed to the project. However, references to women, mothers and parents do occur in the report in quotations and participant testimony.

Language Matters

Participant contributions to the EStELC Project make clear that language truly matters when it comes to pregnancy loss. In this context, language can, in the words of several lived experience participants, have a “huge impact” on the experience of loss and a person’s subsequent mental recovery and wellbeing. Project data indicates that this is because language often acts as a proxy for the potentially very different ways of conceptualising the experience of losing a baby during pregnancy, as well as the conceptualisation of the baby themselves. Language which contravenes, contradicts, or rejects an individual’s conceptualisation of their experience and baby can therefore be distressing and invalidating.

“I see clients years later who are still distressed by the language that was used” (Healthcare professional participant)

“The way I was spoken to and [m]y baby was spoken about has had a profound and long lasting impact on how I have handled the loss” (Lived experience participant)

“Words matter a lot” (Lived experience participant)

The flipside of the distressing, invalidating, or otherwise upsetting experiences we heard about during the EStELC project is that language can act as a ‘key’ that can be used to understand someone’s perception of what has happened to them. The project data shows that language often becomes the mechanism through which someone’s fraught and fragile conceptualisation of their experience and their baby is either endorsed by the outside world, or, more often, by which it is undermined or dismantled.

These findings have led us to a simple conclusion: that it is always best to ask what language someone wants you to use to discuss their pregnancy loss, rather than assume.

Research Questions

The questions the EStELC Project set out to answer were as follows:

1. What language is being used to describe different experiences of pregnancy loss in UK health settings?
2. What impact is such language having on experiences of receiving and delivering healthcare during and after pregnancy loss?
3. How do people with lived experience of pregnancy loss, or professional experience of delivering care to those experiencing pregnancy loss, feel about the language used?
4. What preliminary recommendations can be made for implementing a trauma-informed language framework for pregnancy loss in clinical settings in the UK?

To begin answering these questions, written and oral contributions were gathered from participants in two research cohorts. One cohort represented people with lived experience of pregnancy loss, and the other was comprised of people whose professional role involves providing care for people experiencing pregnancy loss.

Aims and Scope

When the Expert Advisory Group first convened in December 2023, the aims and scope for the project were defined:

1. Above all, the project will centre, listen to, and amplify the voices of people with lived experience of pregnancy loss.
2. Alongside (1), the project will seek to understand the challenges of using language around pregnancy loss in clinical settings.
3. The project will work to begin establishing an evidence base that will allow progress around pregnancy loss language to be guided by evidence.

In order to fulfil these aims, written and oral testimonies on the impact of language in receiving and delivering healthcare during and after pregnancy loss experiences were gathered. Lived experience participants were able to submit written contributions via UCL’s REDCap survey system, answering the questions, ‘‘Why would you like to take part in this study?’ and ‘Are there any issues or events related to language and pregnancy loss that you would particularly like to share during this project?’.

These participants were then invited to participate in a Listening and Discussion Group focused on a particular aspect of their lived experience, if they felt able to. Healthcare professional participants were also able to submit written contributions via UCL’s REDCap survey system, answering the question ‘Are there any issues, topics, or events related to language and pregnancy loss that you would particularly like to discuss during this project?’, and were also then invited to participate in a Listening and Discussion Group with fellow healthcare professionals.

“I would love to make an impact so others don't have to experience such pain in the language or lack of trauma informed practice around baby loss” (Lived experience participant)

“[I want to talk about the] importance of using the same language the patient (or client) uses. For example many people use the phrase 'born sleeping', others use baby loss. But both these can cause distress in their own way for some other people” (Healthcare professional participant)

Reports

• Final project report
• Final summary report

See also

• SuPPL Project