‘Sunshine’, ‘angels’ and ‘rainbows’: language developed by mothers bereaved by perinatal loss

Perinatal loss is a term that includes losses that occur during pregnancy or shortly after birth. As many as one in five pregnancies end in miscarriage, resulting in up to 45 000 hospital admissions annually in England (NHS Digital Secondary Care Analysis, 2019). In England and Wales, almost 2500 stillbirths were recorded in 2020 and over 1700 neonatal deaths were recorded in 2018 (Office for National Statistics 2021; 2022). Despite the prevalence of perinatal loss, western societies often fail to recognise the significance of such losses and their psychological impact on those who experience them (Martel, 2014; Heazell et al, 2016; Farren et al, 2020). Depression and anxiety levels have been found to be significantly elevated in women who are pregnant following a loss (Hunter et al, 2017). A pregnancy after a loss is not only potentially a time of anxiety as a result of previous pregnancy experiences (Moulder, 2001), it is also a time when the individual may still be grieving their loss.

Pregnancy is a time of frequent contact with professional services (Oates et al, 2012), providing an unprecedented opportunity to identify those with psychological difficulties and offer support (Hogg, 2013). Midwives play an important role in the psychological wellbeing of women under their care. However, studies of midwives’ perceptions of care (Noonan et al, 2017) and reports on midwifery practice (Sands, 2016) refer to the need for better training and support for these healthcare professionals. Existing literature focuses specifically on either perinatal loss or subsequent pregnancy, rather than the whole experience, and is predominantly quantitative (Hunter et al, 2017; Hutti et al, 2018; Farren et al, 2020). This results in a fragmented approach in existing evidence, and means distress is often measured through psychometric scores that fail to represent the experiences of those who do not meet psychiatric thresholds.

Aims

This qualitative study aimed to explore the subjective experiences of women who had lived through a perinatal loss and a subsequent pregnancy, and particularly what support made a meaningful difference to their experiences. The research was undertaken as part of a counselling psychology doctoral thesis, and identified the importance of language in shaping individuals' experiences. The developed themes are reported with the aim of informing midwifery practice.

Methods

Data were collected through 40 completed qualitative online surveys and five semi-structured face-to-face interviews with women who had experienced a healthy pregnancy following a perinatal loss. The use of two forms of data collection gave participants a choice about how to engage with the research, increasing accessibility, while providing both breadth and depth to the data (Neville et al, 2016).

Sampling

Purposive sampling through social media platforms was used to recruit women who had experienced pregnancy after a perinatal loss. Participants were women over the age of 18 years, English speaking, who had a child under 5 years old (to ensure participants had a recent healthcare experience) and who had experienced any form of perinatal loss in the previous pregnancy.

As postnatal depression can occur any time in the first 12 months after birth (NHS, 2018), those in the postnatal period were excluded to avoid causing distress at this vulnerable time. There were no restrictions placed on type of perinatal loss, as the differences between the medical labels attributed to losses are based on gestational age, rather than relating to the way in which losses are experienced (O'Leary and Warland, 2016).

Data collection

Data were collected through surveys and interviews. The questions for both were developed following a review of existing literature and started with an open-ended invitation to participants to share their loss experience. Then the questions addressed support received from both professionals and family and friends around the time of the loss, feelings about becoming pregnant again, support received during the pregnancy, whether and how the loss experience impacted on their pregnancy and feelings about the loss after the birth of their child.

Of the 41 participants, 40 completed the survey, and five took part in interviews (four of whom had also completed the survey). The participants' self-identified demographic details are summarised in Table 1. Participants had experienced losses throughout pregnancy, with many having experienced more than one loss. The perinatal loss experiences of participants are summarised in Table 2.

Data analysis

All data were analysed using reflexive thematic analysis, as this allows the flexibility to combine multiple sources of data (Braun and Clarke, 2006; 2021). An inductive approach was taken, working with the data from the bottom-up (Braun and Clarke, 2013), exploring the participants' perspectives, while also examining the contexts from which the data were produced. The analysis sought to develop patterns across the data in order to tell a story about the journey through loss and the next pregnancy. The six phases of Braun and Clarke's (2006; 2021) reflexive thematic analysis were used through an iterative process, as seen in Table 3.

Ethical considerations

This project received ethical approval from the Health and Applied Sciences Faculty Research Ethics Committee at the University of the West of England (reference HAS.18.07.197), and adhered to the British Psychological Society's (2014) Code of Human Research Ethics. Informed consent was obtained before participation in either survey or interview. Surveys were completed anonymously and interview data were anonymised during transcription.

Results

The overarching theme ‘finding the words: language, labels and legitimate distress’ was developed to represent the way in which participants used language to challenge societal silence and legitimise the personhood of their loss (mothers assigned personhood to their baby from the earliest stages of pregnancy, although perinatal losses are not medically or socially recognised as the loss of a person), while creating a community of support. Therefore, in the data shared labels seemed to be used that attempted to provide legitimate personhood to losses, whilst creating communities of support. This overarching theme encompassed three themes: silence and denial of death, ‘sunshine’, ‘angels’ and ‘rainbows’: developing a language for loss and ‘we haven't got a word’: the precarious identity of bereaved mothers.

Silence and denial of death

Participants reported silence around their losses and grief, through the lack of words from those around them who did not know what to say, exacerbating feelings of isolation.

‘I think no one knew what to say, so it was a very lonely time.’

(S11)

‘Family and friends generally didn't know what to say… I felt quite alone most of the time.’

(S15)

Participants also highlighted the way in which labels used by others could minimise their experiences, such as medical terminology.

‘They call it “products of conception”… it's very sterile and very clinical… not very caring.’

(Int 4)

The labels used in the hospital were often distressing. This included the use of ‘spontaneous abortion’ (S21) and ‘fetal remains’ (S30) to describe miscarriage, as well as the use of ‘miscarriage’ (S30) for losses that required giving birth.

The labels linked to gestation minimised the legitimacy of the baby's personhood, with a significant impact on the experience.

‘I think there is very little information regarding loss in the middle months. Before 12 weeks, it's classed as miscarriage, after 24 weeks, it's a stillbirth, but what was I? The term used was a late miscarriage, yet I gave birth, I had full labour, my breasts produced milk for a baby that wasn't there.’

(S21)

For participant S21, the label of ‘late miscarriage’ did not acknowledge the experience of giving birth and the postnatal period. For those with earlier losses, there can be a perceived hierarchy to loss labels that can be dismissive of the grief and distress experienced.

‘It would be nicer if early miscarriage could be acknowledged. There's a lot of focus on stillbirth… but early loss is just considered “one of those things” when really it can be devastating.’

(S11)

These experiences led to an effort to develop terminology that might help break societal taboos around perinatal losses.

‘Sunshine’, ‘angels’ and ‘rainbows’: developing a language for loss

Specific language was used as a way to legitimise loss or distress, including labels attributed to both living and lost children. The most common of these labels was ‘rainbow baby’, a term for a living child after loss. This term was used without an explanation of its meaning, highlighting how normalised this was within the baby loss community.

‘Our rainbow baby boy… was born.’

(S21)

‘I… finally got my rainbow baby.’

(S36)

The term ‘rainbow’ seemed symbolic of a new life fitting into a wider family narrative, one where hope was only found after suffering. While not referring directly to the lost infant, the label rainbow baby provided symbolism of the relationship between the lost and living children.

Participants also reported that ‘rainbow’ was a term adopted by specialist services that catered for pregnancy after loss, including NHS clinics.

‘I attend a rainbow antenatal clinic and see the same consultant. They all know me and my partner and know what we have been through.’

(S29)

Having a specific term used by both women who had experienced loss and those who cared for them suggested a clear recognition that any pregnancy that was experienced after a perinatal loss was different and therefore that it needed to be labelled as such. However, despite its common usage, there was also ambiguity in the term. Participants commonly referred to a baby after any loss as a rainbow baby, although rainbow antenatal services were usually available after late losses, such as stillbirth. While this may have been necessary as a result of the prevalence of miscarriage, it also excluded women who may have needed it from recognition that they were not experiencing their pregnancy with the same hope and aspiration that may have been experienced prior to loss.

Living children were referred to differently, depending on whether they came before or after loss. The term ‘sunshine baby’ was used by participants to describe a child born before a loss.

‘My sunshine baby, she's my life saver… My rainbow baby, she healed me in ways I never knew possible.’

(S20)

The different terms for living children highlighted the significance of a loss event; for these mothers, there was a before and after and a difference between ‘sunshine’ babies and ‘rainbow’ babies. For this participant, her ‘sunshine’ baby, who was born before a loss, was considered protective, giving her a reason to continue to live. Her ‘rainbow’ baby, coming after the distress of loss, had a different role in bringing healing. The term ‘sunshine’ was only applied retrospectively, once a following sibling was lost. This showed the way in which experiences were developed and reframed based on the fertility journey.

For the loss itself, there was more ambiguity about how to refer to it, which seemed to partly reflect a lack of social norms. Some used the term ‘angel baby’, which seemed to suggest a continued heavenly existence for these babies:

‘I've got living children, as well as my angel.’

(Int 1)

‘I had to be sedated to have my angel girl removed.’

(S19)

These representations implied a spiritual or supernatural aspect to the experience, bringing both comfort and connection to the deceased. Participants suggested that the medical language used to refer to their losses denied both death and personhood, and most referred to their losses as babies, with a sense of continued existence either in memories or life after death.

The labels used by the participants reflected not only the different identities of their children, but also their changing motherhood identity. There seemed to be an attempt to develop social norms through common language, and also provide rich symbolism that represented the experience in terms that were socially acceptable. The development of common terms seemed to be both a result of and contribute to the creation of communities of others with similar experiences. The importance of collective symbolism was apparent in the data, with many participants accessing online support to connect with other parents with shared understanding. When asked if any support was sought, one participant stated she had been supported ‘baby loss groups on Facebook’ (S19).

Shared language seemed to be a way of establishing a supportive community, as well as communicate to outsiders of that community in terms that held meaning.

‘We haven't got a word’: the precarious identity of bereaved mothers

Despite developing common language for babies in relation to perinatal loss, the lack of a word to describe a grieving parent was considered significant.

‘I always wanted, that was my long-term goal, was to get a word that meant the equivalent of orphan or widow, that you could use in society to explain that you have got a loss…that is something that's quite important…we haven't got a word.’

(Int 5)

The lack of a word to describe a parent who had experienced a loss, equivalent to widow or orphan, meant that there was a perceived failure by people to acknowledge the position of bereaved parents in society.

Participants also questioned the ambiguity of the term ‘mother’, at what point this label applied and when women could include this as part of their identity. In the face of uncertainty after multiple losses, one participant asked ‘would I ever be a mother?’ (Int 2), but experienced the miscarriages differently after her daughter was born.

‘Having a healthy baby…there was just a lot of pressure taken off, [be]cause I was like “now I have a child, I am a mother.”’

(Int 2)

It seemed that ‘mother’ was a term that was unavailable to women experiencing loss, but could be used in reflecting on their experience, as this in part gave validity to the personhood of the lost child. When asked if she considered herself a mother after the loss of her daughter, one participant responded that ‘then I wouldn't, now I would…I was a mother the whole time’ (Int 1). Although she had been unable to consider herself a mother until she had a healthy baby, she was able to give herself this identity retrospectively for her first pregnancy.

Not owning the identity of mother could impact on the child's identity, but was a difficult title to claim without the ability to carry out what was perceived to be the actions of a mother.

‘When I ordered the headstone, that really started to hit me, because it was the first time I wrote “mother” when it said “relation to deceased”…well how can I be a mummy when I've not had chance to bath her and dress her and change her?’

(Int 5)

However, despite her own struggles with her motherhood identity, this participant was inclusive in her definition of a mother, out of a desire to support others.

Discussion

In exploring the experience of perinatal loss and subsequent pregnancy it was apparent that terminology could be both validating and dismissive of a mother's distress. The present study's participants' use of new language to represent their experiences seemed to be a form of symbolism, both as important expressions of meaning making through grief (Nadeau, 2006), but also a way to develop a community with others who shared in the language and identity that this gave (Sawicka, 2017). Society has established rituals, expected behaviour by both the bereaved and those who interact with them, with bereaved status achieved through the recognised death of a loved one (Corless et al, 2014). Where perinatal loss is not acknowledged as such a death, a mother may be denied the status of ‘bereaved’ and not treated as such by either professionals or others within their social sphere.

Despite grief responses being recognised in all forms of loss, grief is often invalidated by medical and social silence (Martel, 2014). This sense of hierarchy can be exacerbated by healthcare workers' assumptions that consider later losses as more traumatic than early loss (Murphy, 2019). The way in which labels can legitimise or dismiss not only the distress someone feels but also the personhood of the lost raises questions about what is ‘counted’ as a baby, and how this differs between individuals, professionals and society more generally. A mother can attribute personhood from the earliest stages of pregnancy, despite this being ‘revoked’ by cultural taboos in the face of a loss (Layne, 2000).

Language around early losses has developed in line with advancements in medical technology and societal expectations, with ‘miscarriage’ being favoured over the medical term ‘spontaneous abortion’ since the mid-1980s (Moscrop, 2013). For those whose losses sit on the margins between legal definitions of miscarriage and stillbirth, the distinctions made can exacerbate distress by failing to prepare women for the process of giving birth and invalidating their experience through lack of recognition (Smith et al, 2020).

Grief and the relationship with the lost are evolving processes, and the narratives around this develop and are shaped by the language available (Hedtke, 2002). Symbolism provides important cultural tools for understanding experiences and for prescribing emotional reactions to situations (Sawicka, 2017). However, such symbols do not exist for miscarriages and stillbirths, leading to ambiguous emotional experiences (Sawicka, 2017). The data suggest that mothers were able to develop their own symbols and therefore support themselves and each other when emotionally processing their losses.

The way in which participants used labels to legitimise their losses, and the significance of their experiences, while rejecting the labels used by medical professionals, highlighted the emotive nature of language. The inadequacy of language to provide a label for parents who lose a child can make their role in society and identity as parents precarious (Seigal, 2017). Healthcare professionals can make a meaningful difference to women's experiences by having an increased awareness of the terminology used when caring for those who have experienced perinatal loss. Avoiding medicalised terms while choosing language that validates a mother and the identity of their loss may significantly improve women's healthcare experiences, and requires empathic sensitivity to the subjective experience of those being treated.

Limitations and future research opportunities

As the participant group was predominantly white British heterosexual women with partners, recruitment of a more diverse participant group would help further develop the findings. While this study focused on the lived experiences of mothers, understanding the role of both social and professional support could be further developed by future qualitative research with those surrounding the mother, including partners and healthcare professionals.

With terminology playing such a key role in the findings, the researchers are aware of how the language of the questions may have limited responses. While they aimed to provide an opportunity for women to share their stories in their own words, no terms are neutral and there were examples of individual differences among participants in what language they embraced or rejected, as well as how they framed their experience. Further research that specifically seeks to explore the language of loss in more depth could help provide more nuanced understanding of these important issues for healthcare professionals.

Conclusions

Qualitative survey and interview data were used to explore the experiences of mothers who had been bereaved by perinatal loss and gone on to have a living child. The need for developing a common language seemed to be an important part of breaking the silence and taboos around baby loss. However, these participants' experiences show the importance of this language being developed by rather than for bereaved parents, as well as the need for healthcare professionals to be aware of the power of the labels they use, and to be inclusive of the subjective experiences of those who they care for. Empathic care requires sensitivity to the way in which terminology can both validate and dismiss distress experienced by bereaved mothers.

Key points

• Societal silence and medical terminology can exacerbate the distress of perinatal loss, both during loss and in subsequent pregnancies.
• Bereaved parents develop symbolic labels for their lost and living children that acknowledge the personhood of the loss and their lasting legacy within the family.
• Shared terminology provides socially acceptable language and leads to the development of a community of support with others with shared experiences.
• Participants identified the terminology used by midwives as an important way in which care can make a meaningful difference to the experience of bereaved mothers.

CPD reflective questions

• What key things do you take away from this research with mothers?
• How will this impact on your practice?
• What labels are used for perinatal loss in your workplace and how might these be understood by parents?
• Would you consider losses early in pregnancy as bereavements?
• Considering your experience of working with perinatal loss, is there anything you would do or say differently?