Reconciling the Uniquely Embodied Grief of Perinatal Death: A Narrative Approach

Abstract

The death of a baby, stillborn or living only briefly after birth, is a moral affront to the cycle of life, leaving parents without the life stories and material objects that traditionally offer comfort to the bereaved, nor—in an increasingly secularized society—a religious framework for making sense of their loss. For the grieving mother, it is also a physical affront, as her body continues to rehearse its part in its symbiotic relationship with a baby whose own body is disintegrating. Attempting to forge continuing bonds with her child after death makes special demands upon the notion of embodied spirituality, as she attempts to make sense of this tragedy in an embodied way. This paper, which reconciles the distinct perspectives of bereaved mothers and children’s doctors, proposes that the thoughtful re-presentation of medical insight into pregnancy and fetal development may assuage parents’ grief by adding precious detail to their baby’s life course, and by offering the mother a material basis to conceptualize her own body as part of the distributed personhood of her baby.

1. Introduction: The Uniquely Embodied Grief of Perinatal Death

The aim of this paper is to show how perinatal death makes special demands upon the notion of embodied spirituality, and how these demands can be addressed through ad hoc metaphorical re-imaginings of certain insights from medical science. These ideas arise from the search for a common understanding between two distinct perspectives: the objective/clinical perspective of the children’s doctor and the subjective/poetic perspective of the grieving mother. Thus, in the following pages, we use two registers to describe the death of the baby: the first summarizing the facts, figures, and emotional consequences of this tragically commonplace event; the second describing the uniquely corporeal experience of perinatal death. The purpose of this reconciliation of viewpoints is to create a model that can be used by parents in practical ways to assuage their grief by coming to understand the ways in which an unbroken lineage of bonds can be seen to exist all the way from conception to interment and beyond.

We use the term “embodied spirituality” to describe the notion, which we achieve through our human capacity to suspend disbelief, that the essential yet invisible force that gives each their unique personhood must somehow be expressed in their flesh. In this view, far from hindering spiritual flourishing, the body and mind play an equal part “in bringing self, community, and world into a fuller alignment with the Mystery out of which everything arises” (Ferrer 2008). Given the Western pluralistic and secularised context of this paper, we re-interpret “Mystery” here in a non-religious sense to denote a sense of meaning and connectedness that goes beyond rational understanding. Given our focus on perinatal loss, this paper identifies especially with the tenth feature of embodied spirituality discerned by Ferrer in his essay on the subject: the “integration of matter and consciousness”, which we return to in the Conclusion (Ferrer 2008). As Wojtkowiak demonstrates in her study of embodied spirituality in secular ritual at the start of life, embodiment plays an especially important role in making meaning of pregnancy and birth (Wojtkowiak 2020). As we will see, this role is amplified when a baby dies.

Of all pregnancies, one-quarter are lost before 12 weeks, and many before the woman has recognized that she was pregnant. The death of a baby from 28 weeks and/or over 1000 gm is defined by the WHO as a stillbirth and includes babies who die from birth to 28 days of age in perinatal deaths. The perinatal mortality risk falls from 20 weeks, but with 60% of stillbirths occurring between 20 and 26 weeks. The incidence of stillbirths and neonatal deaths in high-income countries is 3 per 1000 births and, for low-income countries, 23 and 26 per 1000, respectively (Australian Institute of Health and Welfare 2021). For comparison, the infant mortality rate for babies in high-income countries is now as low as 3 per 1000 live births. For example, in Australia, the incidence of neonatal death fell from 3.2 to 2.4 per 1000 between 1999 and 2018. Post-neonatal deaths (from 29 days until 12 months of age) were between 0.5 and 1.0 per 1000, with congenital abnormalities being the main cause (Australian Institute of Health and Welfare 2021). The terminology of fetal and neonatal death is complex. For simplicity, in this paper, we will refer to all of these deaths as ‘perinatal death’ and will use the word ‘baby’ regardless of gestational age.

The figures of the burden of mortality do not convey the burden of grief. The grief from perinatal death weighs immediately and heavily on the midwives and doctors attending the delivery; tears are hidden behind surgical masks. The expected trajectory of pregnancy and labour is the joyful arrival of a baby, not the failure that is death. This effect is described as “moral injury” by a psychiatrist in relation to the distress suffered by her colleagues caring for young people dying of COVID-19: a death that violates their moral code and individual beliefs about what is right or wrong and causes feelings of shame, guilt, and anger amongst such caring health professionals (Alexander 2021).

For its family, the death of a baby can cause greater grief than the death of a spouse or parent (Sanders 1980). Added to this is a social constraint to the expression of grief as a result of social and systemic underestimation of the significance of such a loss, as the following summary makes clear:

“In stark comparison with other types of losses, when a pregnancy is lost there are no communal rituals for grieving, no customary religious or social gatherings, no condolence cards or flowers, nor is there even a death certificate, burial, or gravestone for the lost baby. […] Perinatal loss […] is the only type of loss in Western society for which there are no culturally sanctioned rituals or traditions to help the bereaved say good-bye.”

(Markin and Zilcha-Mano 2018)

Markin and Zilcha-Mano make a convincing case that “Western culture as a whole invalidates perinatal grief”, shrouding it in a silence that amounts to a powerful taboo which forces parents to “grieve in isolation” (ibid.). Studies of perinatal grief show how the mother feels that in losing her baby she has lost part of herself (Littlemore and Turner 2020), that she suffers a loss of personal competence, the risk of losing her valued place in the family, and feelings of guilt, with one quarter of mothers blaming themselves (Christ et al. 2003). This has the effect of placing much importance on knowing the cause of the loss, for which there is often no clear answer (Moulder 2001). No clearer is the parents’ sense of who their baby was or might have become, nor, in many cases, their sense of whether or not they perceive themselves—or are perceived by others—to be parents at all, if they have no living offspring (Murphy and Cacciatore 2017). All these ambiguities mean pregnancy loss can be described as an example of “disenfranchised grief”, which “is not or cannot be openly acknowledged, publicly mourned, or socially supported” (Doka 1989). In these circumstances, mothers may find themselves permanently preoccupied with the loss of their baby, may experience visual, auditory, or physical hallucinations of its presence, and any emotional conclusion to their grief may be inhibited; the aim of therapeutic support is therefore reconciliation with her grief (Christ et al. 2003).

In seeking reconciliation with any bereavement, there is a deep human need to continue rather than relinquish bonds with the deceased (Klass et al. 1996). These bonds are principally ephemeral: keeping the relationship alive by treasuring and sharing memories, continuing to mark significant anniversaries, or spending time with the memory of the deceased in prayer or imagined conversation. However, material objects and practices also play their part: Clothing may be treasured for the familiar touch or scent of a loved one, and possessions may spark memories and support the feeling of continued lineage from the life of the deceased to the lives of those they leave behind. This network of meaningful objects comes to stand for the deceased loved one and can be understood as contributing to their “distributed personhood”, a term used to describe “a model of the individual which transcends the boundaries of the body” (Hockey et al. 2010).

Such is the power of the material in the face of grief that when a baby dies, bereaved parents are encouraged to create a material legacy not yet accumulated over the course of a life so brief. Many hospitals now provide memory-making boxes containing blankets, teddies, and materials for creating hand and footprints. Just as many are comforted by viewing the body of a loved one at the end of a long life, so bereaved parents are supported in hospitals to spend time engaging in “parenting practices” such as bathing, dressing, and holding their baby after death (Bleyen 2010; Schott et al. 2016). This helps parents create embodied memories of the material ‘realness’ of a baby only just welcomed into the world and too soon to be lost to cremation or interment (Layne 2000).

We can think of these objects as “materially grounded metaphors” (Hockey 1990). In his historical study of the materialities of stillbirth, Bleyen examines the role material objects and material practices can play in keeping an absent baby present in its parents’ lives (Bleyen 2010). Building upon Nisbet’s description of metaphor as “a way of proceeding from the known to the unknown” (Nisbet 1969) and Hockey’s observation that materially grounded metaphors can make sense of death and grief, he shows how certain objects chosen by families—a ceramic mushroom set as a headstone, a doll, a cradle—can “enable fragments of life to converge into ‘things’ that give a sense of wholeness”, making both the unknown baby and the ungraspable reality of its death tangible and knowable within the home and in the continuing life of the family (Bleyen 2010).

Knowable, but still ambiguous. Following Littlemore and Turner (2020), in the metaphors surrounding pregnancy loss, “it is not always possible to identify a clear source and target domain” (61). In the material metaphor of the doll, for example, the doll (given to a four-year old girl after her baby brother died) is the source domain, but the target domain is not quite clear. The doll is not exactly a metaphor for the lost baby, but for something “both absent and present” (Bleyen 2010):

“Although the toy was treated as if alive, appearing to make her daughter’s ‘little brother’ a tangible reality, the ‘little brother’ nonetheless remained intangible. Each time the mother and the daughter touched the doll, ‘little brother’ would slip through their fingers.”

(ibid.)

There is something else unique about the material realness of the deceased when a baby dies, which plays a profound and under-acknowledged part in the mother’s efforts to establish continued bonds with her baby after its death. Physically, a newborn baby should be inseparable from its mother. Had it lived, they would have remained “a single ‘psychobiological organism’” for some months after birth (Phillips 2013), so when a baby dies, the mother feels its absence physically. Her lonely continuation of their co-dependence is illustrated by the following quotations:

“I felt a real physical loss because she was attached to me for her whole life—then she was gone. And then I had all this milk and there was no baby. I felt as though a part of me had been cut out…”

—Jessie (Davis 1996)

“For a couple of weeks after the triplets were born, I could still feel them kicking inside me. […] it’s a nightmare because I know the kicks aren’t real.”

—Georgia (ibid.)

“My arms just ached. I’ve read about this and it’s hard to believe, but to me there was actually a physical emptiness. I could almost feel my arms cradling, but there wasn’t anything there.”

—Meryl (ibid.)

The reality of the baby’s disintegrating remains—the very different journey its body takes from that of the grieving mother—is conspicuously overlooked in therapeutic literature on pregnancy loss. It might seem “unpleasant”, “morbid”, or even “ghoulish” to anticipate parents having this concern in mind. Indeed, these are the very words used to describe the concerns of mothers preoccupied with the physical condition of their babies who had died in utero as they awaited an induced birth (Forrest 1983), although clinicians’ perceptions of such concerns are now much more sympathetic: (Jonas-Simpson and McMahon 2005; Malm et al. 2011). Yet these feelings, unpleasant indeed, are real, and they are no less real after a baby’s burial:

“I’ve had nightmares about him, what he is like in the grave, digging him up, things like that. […] Every once in a while I think about what’s happening in the grave, and I don’t know why I do that. […] I think I’m just obsessed.”

—Desi (Davis 1996)

How is a mother to come to terms with this nightmarish reality and, moreover, to nurture a sense of continuing bonds with her baby when their bond is so intimately situated within her own body? Littlemore and Turner’s recent study of metaphor use in pregnancy loss, which finds through qualitative metaphor analysis of interviews with bereaved parents “that pregnancy loss is construed as an embodied experience”, reveals one strategy. They note that many of their respondents had had tattoos associated with their babies “in order to compensate for this loss”, with one mother reporting: “I wanted to get [the tattoo] as soon as possible. I was like putting her on my body again.” (Littlemore and Turner 2020).

2. Methods: Researcher as Instrument

In this paper, we explore another strategy that may help mothers notionally return their baby to their body, this time based on narrative approaches to medicine. Narrative has long been drawn upon in therapeutic contexts, and more recently has been acknowledged in medicine and healthcare as a resource for making sense of complex experience (Hurwitz and Bates 2016), for instance, lending a sense of structure to the “biographical disruption” that is a chaotic illness trajectory (Kleinman 1989) or binding it into meaningful story elements that might otherwise seem meaningless. If, as Verghese attests, “story helps us make sense of events in our lives” (Verghese 2001), then metaphor helps us plumb the depths of these events, allowing the communication of “meanings otherwise elusive” (Charon 2006). Littlemore and Turner’s study of language use in baby loss focuses on metaphor not only because people experiencing especially painful emotions tend to draw heavily upon metaphor to understand and express their experience (Gibbs 1994) but because metaphor is especially adept at expressing meaning that seems to exist beyond words, including meaning that is, in some way, corporeally bound.

To gain insight into the depth of such experience we draw upon a personal maternal account of anticipated neonatal death by one of the authors of this article (T.N.). This is necessarily a personal, subjective, and anecdotal source of information which is also richly metaphorical in nature. While such a source has its limitations, in the context of embodied spirituality after pregnancy loss, we believe it has a place. In her study of loss and bereavement in childbearing, Mander argues persuasively for the value of a researcher’s subjectivity and emotional involvement in conducting semi-structured fieldwork interviews on pregnancy loss because of the emotive and intimate nature of the subject, and notes that her “personality constitutes part of the research instrument, in contrast with the usual need for the researcher to be a neutral ‘non-person’ to avoid bias” (Mander 1994). The subjective first-person voice of lived experience, and the irreplicability of the anecdote in particular, has come to be valued in the medical and health humanities because they bring what Walter Benjamin has described as a “pathos of nearness” into otherwise data-oriented decision-making processes. Finally, we propose that the bereaved mother’s voice is a welcome one when “many parents are still silenced and discouraged from expressing the reality of their grief and sadness” (Benjamin 1999; Jonas-Simpson and McMahon 2005).

The following account, and the commentary that runs through it, plays three roles. First, it sets out in real terms the mother’s profound connection to the corporeality of her baby not only before birth but after death and, consequently, the urgency of the maternal need to reconcile the unacceptable problem of her baby’s remains. Second, it indicates the limitations of certain (medical and religious) conceptual frameworks available to her for attempting this reconciliation. Third, it offers one example of an effective (ad hoc and privately meaningful) framework for such reconciliation, which we theorize as an expansion of embodied spirituality to include an acknowledgement and acceptance of the material remains of the baby in continuity with the living body of the mother.

The objective medical perspective cannot be reconciled with the mother’s, but it can inform an approach to how metaphor could support a shift in the subjective inchoate perspective of the realness of the baby’s body into one of “symbolic immortality”, but with the caveat that if seeking a metaphor there should be vigilance in maintaining the boundary between the symbolic and literal (Lifton and Olson 2018).

3. Results: The Mother’s Grief

In the following extract, which recalls the late months of pregnancy with a terminal fetal diagnosis, the mother’s experience of bonding with her baby is imagined as an exchange of messages between herself (outside, above) and her baby (inside, below): a line of communication dropped between them:

“I sang and swayed with Gabriel too. It was easy to feel he and I were engaged in a shared project of growing closer and closer together, a kind of neural and cellular falling in love. I imagined the soft-edged sounds of my speech reaching into his world as the soft-edged forms of his limbs reached into mine. I pressed against the uterine wall and imagined him pressing in return, hands meeting palm-to-palm in dreamlike mirror forms. I sent my songs to him, my movements, my love, and received in return the warmth of the plastic vials [of amniotic fluid, following an amniocentesis], the shadows on the ultrasound screen, the neural pathways pressing on and on towards me as I press and press to imagine his underwater world. I imagined the food I ate was a line dropped down to him, the goodness of which and the vestige of its flavour might be detected in his cells.

I sent him words too; not only the sounds of my voice, but writing. The writing was another line dropped down to him, and I knew he would leave this line behind when he was gone. It was a comfort to think I could continue write to him, just as I was now, after his death. We talk to the dead in their absence; Gabriel’s absence was already here.”

(Norwood 2020b)

The prospect of continuing to write to the baby after its death introduces an emerging confusion over the site of the baby’s presence. When perinatal death is anticipated, the baby’s inaccessibility whilst within the womb is mirrored by its inaccessibility after death, and the womb and the grave begin to seem almost interchangeable. There follow several unsuccessful attempts to make sense of the realness of the dying and deceased baby through a number of conceptual frameworks at the mother’s disposal: first, a medical perspective of fetal development, its lens “no use” to the grieving mother:

“The studies I was reading about fetal development all seemed to observe the period of gestation through a lens positioned at its conclusion: pregnancy seen through the fulfilment of its promise in birth and infancy and the span of new life. Prenatal prosody promises grammar, prenatal touch promises proprioception, even the mother’s attachment to her unborn baby is the making of a promise, assuring her bond to an infant whose survival depends on her care. This lens was no use to me. My attachment to Gabriel was not the beginning of something else; it was happening now, before he was born. It was a promise being kept in the making. And in the same way, surely, even in the oxygen-deprived, sleepy, incomplete, even unconscious mind, even if the activity of the brain was more physical than cerebral, surely something was being made that counted now and not only for later. I wanted an underwater lens that pressed against him, that would move with him as he grew, that would feel the feelings of the unborn mind to understand how his promises are experienced in the making, that would tell me if there was wonder, fear, pleasure, the dark impression of something gathering. These studies could tell me no such thing.”

(ibid.)

After the baby’s death, caretakers of his body employ the commonly-used metaphor of death as sleep. In this case, the body of the dead baby is presented as the body of a sleeping baby—first by the midwife who prepared his body for viewing the day after the birth:

“A little hand had been posed where the blanket was folded as if to grip it, to give the impression of a baby asleep. Perhaps the midwife had arranged him thus in desperation, not wanting to present us with a baby so dead, but she needn’t have worried. It wasn’t being alive that made us love him. Dying had been Gabriel’s way since the very beginning.”

(Norwood 2020a)

—and later by the undertakers who had custody of his body between autopsy and burial, a period which included the week of Christmas:

“They had sent us a letter confirming arrangements for the funeral, the modern, sombre flourish of a monogram introducing the careful scripting of what amounted to a story they wanted to tell us about our son. ‘Your precious baby son’, it read, ‘who had fallen asleep’ at the hospital, had been collected and brought into their care where he would stay until the day of the funeral. ‘Will stay with me’, were the exact words.

‘And don’t worry,’ she said when I phoned her: ‘we’re taking good care of him. Over Christmas we put toys in the cots of all the babies we look after.’

‘That’s lovely,’ I said. ‘Thank you.’

I didn’t ask her to remove the toys. I didn’t say that he is dead and will never play and never had, having only known things graver than toys, principally love and death.”

(ibid.)

If the metaphor of sleep brings little comfort, neither—for this non-religious mother—does the promise of eternal life:

“The undertaker’s letter was twinned with another that had arrived around the same time. They made a pair on the shelf, neither one more or less adequate to the task. The second was from the diocese: no note, just a certificate of baptism printed on plain A4, signed twice in biro and stamped just off-centre with the seal of the cathedral. Nothing ceremonial, and no mark of condolence because the baptism was for the beginning of life, not for its end. In this letter there was no end in sight. No death, just everlasting life.”

(ibid.)

Meanwhile the mother’s body, prepared for nurture, mirrors the realness of the baby’s body, and this lingering corporeal bond begins to open itself to symbolic interpretation:

“Still my body seemed to wait for him. It was natural to me to imagine that the darkened nipples, the womb crimping when I miss him, the colostrum eking out, the blood still gulping down were the expressions of a body gentle and dumb, ready to care for him, longing for his weight and smell and needing to be tricked by simulations. When my arms would rise to my chest to hold him and felt the emptiness there, I could bundle up his blanket and hold it to my chest, or to my shoulder, and all my limbs would relax and the pressure on my neck would be released for a while. When ribbons of blood fell from my womb I would reply I love you too just as I had when he used to kick. My body knew otherwise, but in my mind he must have returned to the resting place of my womb and sent me bloodlines from there.”

(ibid.)

An imagined reunion with her baby after death—not in an afterlife but in the soil—indicates how corporeal is the mother’s loss, as she longs, with little hope, for their bodies to embrace again:

“I could only understand one way to return to him: to get down into the soil where he stays, my grave level with his, and wait until my coffin and tissue disintegrate and then hope that shifts and lurches in the soil over hundreds of years will bring me to him, bring me around him, lay him back in the crock of my pelvis, bog bodies finally returned to one another, and there we would embrace. But in a crowded graveyard might not strange bones drift into our embrace unbidden, might we not drift apart and not together? Who is to say how bones and soil behave?”

(ibid.)

At this point, the earlier confusion over the location of the baby comes to the fore, as the baby is addressed as though he were still in the womb from whence the blood descends. At this point, the baby has two locations: the womb and the soil, and they seem to be imaginatively one and the same, with the mother sending lines down to either:

“And just as I used to sing and sway with him, speak to him and write to him, now I planned to send him a ribbon of my own. Because his coffin was so light they would lower it into the ground with lengths of a ribbon I could choose myself if I wished, and in the ribbon I saw a dull possibility: looped around his box it would have to stay with him in the soil, and there lay some comfort.”

(ibid.)

4. Discussion: Biological Analogues of Love

This glimpse of the innermost thoughts of the mother illustrates her preoccupation with maintaining a bond to her baby’s body when neither the metaphor of eternal sleep nor the claim that “your child is safe in the hands of God” is of comfort (Mottram and Bevan 2015). While the framework above is particular to its author and her experience, it was effective for this mother because it did not flinch from the material realness of her baby’s body, nor did it shy away from acknowledging its continued importance to her and indeed to her own body after his death. In the exceptionally corporeal grief that follows baby loss, solace can be found in stories of the body as much as stories of the soul, and when all, or almost all, of the baby’s life has taken place within the mother’s body, the life stories one might ordinarily turn to for comfort remain largely inaccessible, being for the most part unseen, unfelt, or taking place upon a molecular and chemical level.

This is where clinical narratives can intervene to make a difference. Where life-stories are lacking, precious information can be gleaned from the detailed insights of medical research into pregnancy, the life course of the fetus, and the mother’s post-partum body—provided they are presented in a thoughtful way. Here, we present three stages from the life-course of a pregnancy and demonstrate how each might bear the possibility of symbolic resonance for bereaved parents and might even contribute resources for the distributed personhood of the lost child.

Firstly, there is the permanent presence in the mother’s bloodstream of blood cells (lymphocytes) from the fetus, which remain part of her blood stream for the rest of her life (Schröder and De la Chapelle 1972). This phenomenon of a mixture of cells from two individuals within the blood stream, without any response (termed immunological tolerance) of the host (mother) to such foreign cells, is called micro-chimerism. This can be shown only for cells from a male fetus because these contain a Y-chromosome, which can be differentiated from female cells. The function of these longed-lived lymphocytes is unknown although there is evidence that they have a subtle beneficial influence on the mother’s health in reducing her risk of cancer and adding longevity (Kamper-Jorgensen et al. 2014).

The life-long presence of fetal lymphocytes amounts to a literal embodiment of the fetus within the mother and can be imagined as a material analogue to the mother’s life-long metaphysical bond with her deceased child. Coupled with the imaginative resources of the mother, we see below one example of the impact of such insight, as it contributes to an appreciation for her baby’s realness having continued presence both within her body and in the soil:

“Almost every day after Gabriel died I wrote to him: my imaginary friend returned to me at last. My imaginary child, I thought, neither real before his birth nor after his death, and only very briefly real between.

But as I continued to write I began to understand I was mistaken. He was not imaginary, nor had he ever been, and nor was he quite the same child I had written to before his birth. The simplicity of the baby I had imagined before his birth was resolving itself after his death into the subtler quality of being elemental. Gabriel was, I believed, profoundly of the matter of the world, having emerged from matter and then returned to it almost without a breath—and in between, I chose to believe, secure in his mother’s arms, all he encountered of the world that was not matter was Love.

In my mind this made him a creature composed completely of Love. Not only the feeling of Love but the material fact of it: the Love that is the blooming of life from bonded cells to vaulting structures built on the furthest shores of the mind, the Love that concentrates in those mealy places that incubate life, among them most of all the blood and the womb and the soil. In this way Gabriel was elemental. In this way he wasn’t an imaginary friend, he was Love itself, squirming and pushing and kicking to take up its place in the world. So I wrote to him, and spoke and wept into the blanket of him. I no longer sang or swayed but still I laid my hands where he had lived, and to the ribbons of blood that came I replied I love you too, just as I had when I used to feel him kick. I love you too: here is my declaration of faith.”

(Norwood 2020a)

In this passage, the metaphor is Love, but the realness of the baby’s presence after death is neither metaphorical nor imaginary but physically real.

Secondly, there is the role of the placenta as an interlocutor between the mother and the baby in her womb and as the liminal zone between them. The placenta emerges from the ball of cells (the morula) that quickly forms from the fertilized egg with its genetic code setting it on its own brief trajectory. It has the task of mediating the respective needs of the mother and the baby, with its insatiable demand for nourishment being tempered by the gentle constraint to its growth from maternal influences that preserve her homeostasis (Wells 2003). These roles play out according to the dictates of its neuro-chemical clock, for by 40 weeks, its destiny is complete: Without capacity to continue, it must separate from the womb.

The placenta’s literal mediation of maternal and fetal demands can be imagined as a material analogue for the mother’s ambiguous feeling of interdependence yet being separate from the fetus and of her body’s ability to send messages through the sensory medium of song, rhythm, and the food she eats. Perhaps the tempering of one set of needs against the other and the gentle constraint from the mother’s body might be imagined as the first of what would have been many jostling negotiations over the life course of their relationship together. Slim pickings indeed, but the need of a bereaved parent is great and the resources of metaphor infinite. The symbolic resonance of the placenta is formally acknowledged in many societies where the placenta itself is buried; its return to the earth being symbolic of the site of the child’s kinship origins; for example, in Māori Te Reo, whenua (placenta) also signifies land.

Thirdly, there is the protean social development of the baby in the womb. Babies recognize and prefer not only the sound of their mother’s voice but the rhythms of their native language; knowledge they will use after birth to “bootstrap the acquisition of the grammar and the lexicon” of that language (Gervain 2018). By the third trimester, they can recognize the touch of the mother’s hand against the skin of her belly, and will reach out to the uterine wall to meet her touch for significantly longer than they will for the unfamiliar touch of a stranger (Marx and Nagy 2017). This early touch and recognition of the mother has been theorized as the early development of proprioceptive awareness: “a form of self-consciousness of the embodied self” (Gallagher 1995) which, in shared moments of touch through the uterine wall, constitute “a form of shared sympathy” (Marx and Nagy 2017). These and many other characteristics of fetal development indicate that the very first stages of socialization take place before birth.

Rather than viewing these stages as necessary for the later “bootstrapping” of cognitive developments after birth, a change of focus can emphasize to parents that already, before death, their baby was becoming socialized into the life of the family: that—to quote the account above—“something was being made that counted now and not only for later”. It is evidently important to parents to have a sense of the infant’s state of mind when they die, as we see in the following epitaph from Arretium, dated 407 C.E.:

“Here lies the infant Candidilla

who, although not a full two years,

Had understanding and so she has found rest.”

(Mazzoleni 2015)

When equipped with an idea of the degree of brain development—of ‘understanding’ their baby might have had at the time of its death—families can add further detail to the stories they create for their babies: details which, again, are founded not in metaphor but the realities of fetal development.

5. Conclusions

In the aftermath of pregnancy loss, parents endure not only the death of their beloved baby but also an absence of the narratives and social scripts that ordinarily accompany death, as funeral, death certificate, and even social acknowledgement of their loss and consequent emotional support may not be forthcoming (Markin and Zilcha-Mano 2018). In an increasingly secularized society, they may also lack a religious framework to help make sense of their loss. In many cases, no less lacking are the precious possessions the deceased usually leave behind at the end of life, which, as a form of distributed personhood, offer comfort to the bereaved. Faced with such painful absences, parents bereaved at birth are sorely in need of a narrative to help them navigate their loss (Norwood 2021).

In this paper, we have shown that an under-explored resource can be found in the wealth of existing medical knowledge of pregnancy and fetal development which, if made accessible and presented thoughtfully, can offer precious insight into the brief but meaningful life course of the baby. Support packages for parents bereaved at birth often include written materials offering advice on a range of subjects including memory-making, accessing specialist bereavement support, making funeral arrangements, and post-partum physical exercise. We propose that an additional resource sharing medical knowledge in an appropriate way could benefit parents. Such details—including, for instance, the lymphocytes, the placenta, and the in utero social development of the baby—can be conceived as the source domains of open-ended metaphors which leave the target domains unspecified, so that they are open to parents to complete in their own way. The material and corporeally bound nature of these open metaphors might be especially comforting given that, for its mother, the loss of a baby prompts an exceptionally corporeal experience of grief. Learning the biological detail of her baby’s life before birth and its emerging socialization into the culture of its family may not only help add detail to the picture of an unknown child but also offer the mother a material basis to conceptualize her own body as part of the distributed personhood of her child, whose presence will literally (in its lymphocytes), as well as symbolically, be with her always.

To sift through medical information for insights that might be resonant or meaningful to parents; to translate the language of the clinician into the language of the parent; to transpose the orientation of the clinical focus from the future life of a fetus to the present moments of a life too brief: this is creative and empathic work, demanding close collaboration between the sciences and the humanities. As such, this work would represent a meaningful application of the insights of critical medical humanities, which emphasize the value the humanities can bring to medicine over and above its capacity to illustrate or simplify medical ideas (Viney et al. 2015).

Meeting spiritual needs with detailed biological information, spanning from conception to interment, gets to the heart of our own interpretation of embodied spirituality and the “integration of matter and consciousness” it entails (Ferrer 2008). By presenting a secular and poetically open-ended basis upon which to reconcile the ambiguous but material realness of perinatal death with its profound spiritual significance, this encounter of medicine and the humanities may offer comfort to bereaved parents where other available narratives fall short.