Meaning-making after neonatal death: narratives of Xhosa-speaking women in South Africa.

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Meaning-Making After Neonatal Death: Narratives of XhosaSpeaking Women in South Africa a

Colleen Sturrock & Johann Louw

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Department of Psychology , University of Cape Town , Cape Town , South Africa Accepted author version posted online: 20 Feb 2013.Published online: 01 Apr 2013.

To cite this article: Colleen Sturrock & Johann Louw (2013) Meaning-Making After Neonatal Death: Narratives of Xhosa-Speaking Women in South Africa, Death Studies, 37:6, 569-588, DOI: 10.1080/07481187.2012.673534 To link to this article: http://dx.doi.org/10.1080/07481187.2012.673534

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Death Studies, 37: 569–588, 2013 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print=1091-7683 online DOI: 10.1080/07481187.2012.673534

MEANING-MAKING AFTER NEONATAL DEATH: NARRATIVES OF XHOSA-SPEAKING WOMEN IN SOUTH AFRICA


COLLEEN STURROCK and JOHANN LOUW Department of Psychology, University of Cape Town, Cape Town, South Africa

The death of a neonate can be traumatic for mothers, resulting in profound grief, which ruptures their sense of coherence and identity. A narrative approach was used to explore how six Xhosa-speaking women tell stories about the death of their baby to help them understand the significance of the loss. They struggled to establish a sense of their baby as a person to be mourned, to redefine their own identity, and to find reasons for the death. Their meaning-making was influenced by the baby’s father, older women in their community, and the context of deprivation in which they live.

The death of a neonate (an infant less than eight days old) can have a profound psychological and psychosocial impact on parents. This, and other forms of perinatal loss (miscarriage and stillbirth), has been termed a ‘‘disenfranchised grief’’ (Willick, 2006, p. 295), which is not adequately acknowledged either by society or the medical establishment. Research into the effect of perinatal loss on parents has developed in two distinct streams. In western, modern societies, research began in the 1970s, out of a concern to establish an effective way for medical staff to respond to parents’ short term needs (Zeanah & Harmon, 1995). Participants were overwhelmingly drawn from a White, middle class population. The focus was on individuals’ grief, with little attention given to social context (Bennet, Litz, Lee, & Maguen, 2008). In low-income countries, Africa specifically, reproductive research before the 1990s centered on concerns for overpopulation, infertility, and Received 22 August 2011; accepted 10 January 2012. Address correspondence to Colleen Sturrock, 4 Nobel Way, Meadowridge, Cape Town, 7806 South Africa. E-mail: [email protected]

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induced abortions. More recently, medical anthropology, medical sociology, and feminist studies have attempted to give voice to marginalized groups, focusing on the social ramifications of pregnancy loss (e.g., a study in Cameroon by van der Slijpt & Notermans, 2010). Very few of these examine mothers’ grief from an individual mental health perspective. Among the exceptions are Obi, Onah, and Okafar (2009), who found that most women in their study in southeastern Nigeria suffered some level of depression after pregnancy loss; and a qualitative study by Modiba and Nolte (2007) in South Africa, which described the difficulties mothers faced following the loss. Despite the very different research paradigms, there are notable similarities between findings in the western, developed countries and low-income countries. All studies show that grief following perinatal loss can be unexpectedly pervasive and enduring: Although intensity of grief subsides after the first year, many parents still feel sad, guilty, and angry after one to two years. Preoccupation with thoughts of the baby who died can continue for even longer (Elklit & Gudmudsdottir, 2006; Lin & Lasker, 1996; Obi et al., 2009). The death of an infant is often accompanied by a range of secondary losses, such as the loss of an anticipated future, the loss of a sense of the world as a benevolent place, the loss of hope, and the loss of one’s identity as a parent (De Kok, Hussein, & Jeffrey, 2010; Modiba & Nolte, 2007; Wing, Burge-Callaway, Rose Clance, & Armistead, 2001). Pregnancy loss also has significant social implications, although these differ across communities. The intensity of grief can lead to social isolation, and many parents report feeling abandoned by their community. Because few (if any) people apart from parents have seen the baby, there is little sense of a person to be mourned, and the enormity of the loss goes unrecognized (Abboud & Liamputtong, 2005; Wing et al., 2001). Although the loss of a baby causes deep psychological distress and psychosocial disruption, not all parents are at risk of developing enduring adjustment problems. Several studies have tried to identify factors that affect grief outcomes. The most salient of these is familial relationships. The quality of the couple’s relationship is a significant predictor of grief response, as parents rely on each other for emotional and practical support after the loss (Wing et al., 2001; Zeanah & Harmon, 1995).


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Another important factor in helping parents grieve is empathic support, from both their friendship circle and medical staff. Conversely, the responses of medical staff can exacerbate distress, and affect both short- and long-term grieving. Reponses that diminish the loss, withhold information, or imply that the parents are in some way to blame engender a painful sense of powerlessness. Parents who feel they have been listened to, given as much information as possible, and been allowed to make their own choices, experience interaction with medical staff as supportive and helpful in dealing with their loss (Corbet-Owen & Kruger, 2001; Covington & Theut, 1993; Klier, Geller, & Ritsher, 2002). The medical establishment in low-income countries often seems ill-equipped to deal with parents’ grief. In studies from South Africa, Nigeria, and Burkina Faso, women report receiving inadequate information and being discouraged from talking about their loss. Some even report feeling abused by staff (Modiba & Nolte, 2007; Obi et al., 2009; Storeng, Murray, Akoum, Outtara, & Fillippi, 2010). Obi et al. pointed to the difference between these women’s experience and that of women in high-income countries, where grief is now widely recognized as clinically important and medical staff are much more sensitized to the emotional needs of bereaved parents. Social constructivist approaches to grief theory highlight the role of meaning-making in grieving. Janoff-Bulman’s (1992) assumptive world theory posits that traumatic loss shatters fundamental beliefs about the world and disrupts the ability to make sense of life. The bereaved person is left with a frightening sense of meaninglessness and personal vulnerability (Neimeyer, Burke, Mackay, & van Dyke Stringer, 2010; Uren & Wastell, 2002; Willick, 2006). Perinatal loss is a very particular kind of trauma. Although it does not always pose a physical threat to the mother, it is an unexpected reversal of an assumed trajectory and shatters hopes, expectations, and identity. Preexisting meanings contribute to the traumatic nature of the loss. The meaning of the pregnancy to the parents affects both their level of attachment to their baby and their experience of grief. Parents for whom pregnancy holds significant meaning are likely to experience perinatal loss as traumatic (Corbet-Owen & Kruger, 2001; Uren & Wastell, 2002). Studies in Africa reveal the profound social importance for women of bearing a child: Thus


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the social consequences of losing a baby are arguably far greater for women in these communities than in the West (Obi et al., 2009). Producing a viable baby ensures stability in a marriage or partnership, secures a woman’s social status, raises her negotiating power (which is frequently negligible), and ushers her into adulthood. Pregnancy loss for a woman is the loss not only of a child, but also of her social identity (De Kok et al., 2010; van der Slijpt & Notermans, 2010). Drawing together trauma and meaning-making theories, the grieving process of parents following perinatal loss can be seen as a search to integrate the death of the baby into their lives in a meaningful way. If parents are unable to find meaning, they may experience prolonged and seemingly irresolvable grief. Meaning reconstruction involves sense-making (finding concrete and existential reasons for loss), benefit-finding, and restructuring identity (Gillies & Neimeyer, 2006; Neimeyer et al., 2010). However, as Krueger (2005) cautioned, mourning is an individual experience and not all parents undertake meaning construction in the framework described earlier. Personal and contextual factors also come into play. Although many of the studies cited above pay attention to immediate context (such as pregnancy history, the parental dyad, and available social support) none give serious consideration to the effects of the broader context, such as cultural or ethnic practices and discourses, poverty, and unemployment. Moreover, most studies on grief processes have been conducted in Anglo-European cultures, with the sample typically coming from well-educated, middle-class backgrounds. In the period between 2008 and 2009 South Africa had an early neonatal death (infants born live, who died within 8 days) rate of 0.9% of all live births (Saving Babies 2008–2009, 2010). No statistics reflecting the racial distribution of these deaths are currently available, but considering the demographic make-up of the country, it is reasonable to assume that the majority of these losses are within the African population. No formal studies have been conducted among this population. The central purpose of this study was to explore Xhosaspeaking (an African group) mothers’ narratives to understand how they grieve following the death of a neonate. The amaXhosa are the second largest African language group in South Africa,



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numbering just under 8 million (ex-president Mandela, for example, is a member of this group). The majority live in the Eastern Cape province, but over the past four decades many have moved to the Cape Town area in search of employment, settling in townships or informal settlements on the outskirts of the city. According to the 2001 census, 2.7% of the population of Cape Town are Black African, of whom 90% are Xhosa-speaking. Unemployment in the Black African group is high (34.8% compared to 19.4% for the total Cape Town population; Census Bureau, 2001). We believe that the method chosen in the present study is responsive to contextual factors like these, compared to methods that focus primarily on intrapsychic processes. Method A narrative approach was used for this study, based on constructivist epistemology, which holds that people use narratives as a way of organizing life events into a form that gives meaning and coherence to their lives. A narrative is not necessarily a story, as is popularly understood, with a beginning, middle, and end. It may follow a circular rather than a linear structure and include descriptions of episodes, ideas, reflections, and comments on events and people. Narrative arrangement of time seldom follows the sequence of real time, as past, current, and hoped-for events are arranged in ways that makes sense to the author or help to explain a particular issue. Personal narratives are formed in the context of social and cultural narratives that profoundly influence the way individuals interpret their own lives (Albright, Duggan, & Epstein, 2008; Gilbert, 2002; Parker, 2005). Traumatic loss disrupts the narrative flow as the anticipated sequence of events is violated. This can result in a sense of confusion and an inability to place the event meaningfully into the narrative as a whole. Recovery from trauma involves the ‘‘re-storying’’ of life experience, so that the traumatic event can be incorporated into the narrative, and a sense of meaning and identity can be restored (Neimeyer et al., 2010; Wigren, 1994). Exploring the narratives of women who have experienced the death of a neonate is a valuable way to gain understanding of how individuals struggle to make sense of this kind of bereavement. Narrative analysis preserves the context and form of individual


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stories rather than breaking them into thematic segments, so that the narrator’s perspective is retained. The way in which the experience is integrated into narratives through chronological placing and connection with other events has the potential to reveal what the central meanings are as well as how they are derived. By listening for social and cultural voices within the narrative, it is possible to gain an understanding of both subjective experience and contextual influence. Thus it is an approach well-suited to exploring in depth how women engage in meaning-making following neonatal loss (Albright et al., 2008; Gilbert, 2002; Riessman, 2005; Willick, 2006). Participants The study was limited to women whose babies had died within seven days of birth. Permission was granted by a state maternity hospital in Cape Town, South Africa, to access their records of neonatal deaths and identify potential participants. Only Xhosa-speaking women whose babies died between one and four years ago were considered, as studies have shown that grief is still acute within the first year of loss, and interviews within that period could be very upsetting for the women (Lin & Lasker, 1996). The women all lived within the greater Cape Town area. Twenty women were contacted by telephone, with the assistance of a Xhosa speaker. The purpose of this was to ask them if they were prepared to talk to the first author about their loss, and to ascertain whether or not they were comfortable to conduct the interview in English. Eight agreed to participate in the study. The rest did not participate either because they did not want to or because they spoke very little English. Two interviews were subsequently excluded because the poor quality of English made them difficult to understand. Although formal assessments were not conducted, all participants were judged to be of lower socioeconomic status, on the basis of their dwellings and jobs. Only one had a tertiary education. One of the participants was married, one lived with her partner, two were still in a relationship with the baby’s father (although not living together), and two had no partners at the time. Two had had other babies since their loss, three had older children, and one had no children.


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Procedure Ethics approval was sought and obtained from an Ethics Review Committee of the University of Cape Town. Data collection was done through interviews ranging from 25 to 50 min in length. At the outset, informed consent was discussed and the required forms signed by the participant. Assurances of confidentiality were given, and conditions of anonymity maintained (all names were changed of course). The interviewer discussed with participants that the interview might be distressing for them, and that counseling would be made available if necessary. Interviews were recorded and transcribed into text for analysis. The interviewer made brief notes after each interview, to capture salient aspects of the interaction. A few weeks later, each participant was contacted and given a copy of the transcription and a small gift. We spoke briefly about how she had experienced the interview and how she was doing generally. Again an offer of counseling was made, but none of the participants took it up. Data Collection In interviews that deal with sensitive topics such as death, venues can make a significant difference to the comfort or discomfort of the participant. For example, Nontombi was interviewed at her employers’ home. They are very supportive of her, and we were able to conduct the interview in privacy. As a result, she was relaxed and articulate. When given the option to have the interview conducted her in her home, which was little more than a typical informal dwelling in the townships surrounding Cape Town, she made it clear that a visit from a White woman would have drawn unwanted attention to her. Thus for all interviews, possible venues were discussed at some length with the women. Two were interviewed at work, with their employers’ permission, two at home, one at the hospital, and one at the tertiary institution where she was a student. These all proved to be adequate venues. The interview began with ‘‘motivating information sharing’’ (Rogan & de Kock, 2005, p. 633) to explain the purpose of the study and that the information gained from them could be used to help other women who had lost babies. Following Willick (2005), the interviewer disclosed right at the beginning of the


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interaction that she had lost a baby three days after birth in 1990, as this is part of the reason why she had an interest in this topic. Without exception, this disclosure helped to open conversation but was not referred to again. After the introductory comments, the participant was asked to tell what had happened when her baby died, and how she had coped with the loss. Narrative researchers are aware that they influence the construction of stories because they constitute a particular kind of audience that affects the way the participant frames the story, and because they make particular comments and ask questions that can shift the story line (Gilbert, 2002). In addition, differences in home language, race, culture, and age in the present study expanded the possibility of misunderstanding (Rogan & de Kock, 2005). Although the narrative was interrupted as little as possible, it was often difficult to fully understand what was being said, especially as some participants struggled to express themselves in English, despite the fact that they were willing to use English in the interview. We relied on some of the conversational techniques suggested by Rogan and de Kock (2005), which included negotiating meanings by question such as ‘‘I am not sure I understand. Can you tell me more?,’’ supplying linking statements to clarify meanings, and giving supportive or reflective comments. In each interview the participant was asked what she would say to another woman who had lost a baby. The purpose of this was to focus on the most significant aspect of her experience. When participants became very tearful, they were given the opportunity to take a break or stop. In most of the interviews there were prolonged periods of silence until the participant felt ready to speak again.

Data Analysis The small sample made it possible to use both structural and thematic analysis. Structural analysis gave insight into individual meanings and meaning-making strategies, whereas thematic analysis helped identify common meaning-making processes across the participants (Riessman, 2005). Fraser’s (2004) suggested outline was very useful in this regard, as it incorporates aspects of structural and content analysis.


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Results We were able to identify a number of commonalities in meaningmaking processes and sources across the narratives. The two main themes were restoring shattered meanings and factors influencing the loss.


Restoring Shattered Meanings The mothers’ narratives were characterized by attempts to restore the meaningful patterns of their lives prior to the loss. They described ways in which they tried to acknowledge the baby as a person, how they revisited the meaning of pregnancy and motherhood, and attempted to make sense of a death that should not have happened. ACKNOWLEDGING THE BABY AS A PERSON TO BE MOURNED

Literature on perinatal loss indicates that grief is compounded because it revolves around a relationship in which ‘‘all aspects await future realisation’’ (Uren & Wastell, 2002, p. 282). One of the meaning-making tasks of grief is to validate the reality of the child (Neimeyer et al., 2010), especially when no other friends or family members have seen him or her. The women seemed to do so by describing the birth and death in vivid detail; naming the baby; engaging in mourning rituals and having mementoes; mentally comparing their dead baby to other children; and fantasizing about how they would have played together. The women gave moving descriptions of their babies, which suggests the extent to which they view them as individuals, separate from themselves, who need to be mourned. Nosandla’s description of her baby moving shortly after his birth gives a strong impression of him as a living, active person. In a slow, almost reverential tone, she said, ‘‘the baby was breathing, breathing, breathing.’’ Later, she explained how she and her husband, ‘‘saw him moving his hands, opening and closing his eyes.’’ Bongeka’s description evoked the sense of a person with his own thoughts: ‘‘The baby was very small. Even forgetting to breathe. He thinks he’s still inside my womb.’’ Four of the women gave their babies names that held significant meaning for them. Zanele called her baby Lihle (beautiful),


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Nontombi called her baby Bayilitha (light), and Bongeka called her baby Onakho (God can). Zodwa named her baby Sibongile, which means ‘‘we are grateful.’’ To her distress, the gravestone was marked as ‘‘Simbonile’’ which means ‘‘we have seen her.’’ She says she has accepted this as the baby’s name because her family found it very meaningful. She has, however, never been to visit the grave again. Funerals are important rituals that acknowledge the short life of the baby. Nontombi, Bongeka, and Nonkululeko could not afford a funeral, and this is a source of great sadness for Nontombi. Zanele chose not to have a funeral. Zodwa and Nosandla both buried their babies in Gugulethu, the township where they live. Nosandla visits the grave regularly to clean it, which she says helps her to deal with her loss. Personal rituals are also evident in the narratives. For weeks after the death, Nontombi regularly washed and repacked the baby’s clothes. Zodwa watches the local news on televison at midnight as often as she can because the presenter represents to her what her child would have looked like. The maternity hospital offered to take photographs and make hand- and footprints of the babies as mementoes. Zodwa, Nontombi, Nosandla, and Bongeka chose to take these when the baby died. Zodwa and Nosandla look at them with their partners and use the photographs to compare the features of the baby with their surviving children. These practices affect meaning-making by acknowledging the baby as a person with whom the mother had a relationship. This validates the need to grieve. It is striking that Nonkululeko, who has strong ambivalence and even anger towards her babies, is the only one who has done none of these things. She says that she has put it behind her: ‘‘I must be okay now. It’s over.’’ Her orientation is to the future. Indeed, she said the advice she would give to another bereaved mother is ‘‘She must look to the future. Life goes on.’’ It is possible that in her desire to live out her vehement statement ‘‘it is over,’’ she is choosing to forget rather than remember. REVISITING PREGNANCY, MOTHERHOOD, AND IDENTITY

The meaning of pregnancy and motherhood for a woman affects the meaning of the loss. Corbett-Owen and Kruger



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(2003), in a study also conducted in the Western Cape, found that an unplanned, unwanted pregnancy results in a more ambivalent grief response. In the present study, although only Nosandla’s pregnancy was planned, none of the pregnancies were regarded as unwanted. Underlying this attitude toward pregnancy is a strong social meaning around motherhood. There seems to be an assumption that all women should have babies. Zodwa’s mother is delighted her child is pregnant, despite her not being married. Bongeka, although she is currently not in a relationship, says that she does want another child at some stage. This resonates with Walker’s (1995) suggestion that motherhood is regarded as the core of womanhood: The loss of a child therefore profoundly damages a woman’s core identity. It follows that identity can only be restored with the birth of another child: ‘‘The fact that you have lost a baby pulls, pulls you apart. Something in you goes with the baby. And (pause) probably (pause), I think I am complete now. It comes back when you have other babies (Zanele).’’ Losing a baby puts a woman in the confusing position of being a mother with no one to mother. It is difficult to go back to being a carefree woman with no responsibilities: Before I had my second child, that mentality of being a mother never went away, even though I didn’t have child. So I changed from the person I was, because before that I was reckless. I was a drinking girl, going out all night partying. And after my daughter, that all changed (Zodwa).

After the death of their baby, the women engaged in mothering either with their surviving children or with other children. Mothering can restore purpose (Nontombi says she has to be strong for her 4-year-old son) and comfort (Bongeka finds comfort in looking after her nephew, Onke). These meanings—the link of motherhood to womanhood, the role of mother as responsible protector and supporter—imbue the baby’s death with particular significance. The loss deprives women of their identity and role. In restoring meaning to their lives, they seek to recreate that identity through their relationships with their own children, or with others’ children. FINDING REASONS FOR THE LOSS

A common theme in the narratives is the search for a reason for the death. Sometimes this entails looking for a concrete cause.


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Trying to find medical answers does not always clarify the cause of death and often leads to blaming doctors or nurses for not giving adequate care. Sometimes it means trying to answer the existential question: ‘‘Why did this happen to me?’’ Existential searches draw largely on religious discourse. The ‘‘answers’’ found in this way do not always coexist logically or comfortably with other meanings. Unresolved questions about cause of death can prolong grieving indefinitely (Krueger, 2005; Willick, 2006). Nosandla and Nontombi both blame the midwife obstetrics unit in the township for their loss. Nontombi was told that her baby had an infection, and that if she had been transferred to the maternity hospital earlier, he may have lived. Zodwa had a Caesarean section when her membranes ruptured early. She and her boyfriend chose to have a postmortem performed, and they returned to the hospital six weeks after the baby’s death to have the results explained. They were completely confused by the explanation. She says she still doesn’t know ‘‘what killed the other child’’ and blames the hospital for not dealing with them in a helpful way. She is haunted by her lack of knowledge and her narrative is punctuated by the phrase: ‘‘I don’t know, I don’t know.’’ Even for the women who have some idea of what caused their loss, the existential questions continue to be troubling. Restoring existential meaning involves either assimilating the experience into pre-existing belief, or adapting belief to understand the experience (Neimeyer et al. 2010). Apart from Zodwa, who claims she is ‘‘not a great believer in God,’’ the women all believe in a spiritual dimension and derive meaning from that. Mostly, this means accepting that God is all-powerful and all-knowing. I think my trust is in God. If a thing happen, just God likes to be happening (Nonkululeko). I mustn’t lose hope in God and I must trust in what God is doing. He knows the reason why (Nosandla). God knows what he was doing when he was taking away my baby (Bongeka).

The main function of this belief is to help them view the world as a safe place where it is possible to hope, as God is in control.



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However, it does not always accord with meanings or explanations the women raise elsewhere. For example, Nosandla blames the obstetrics unit for the baby’s death yet says God is responsible for what happened. She claims that ‘‘if you have faith in God, you’ll have another child,’’ but on the other hand says that ‘‘my husband is planning to have another child.’’ At one point in the conversation, she wept uncontrollably and then stopped (almost instantly) and comforted herself with the words ‘‘but it’s only God, he give and it’s only God takes.’’ Nonkuleko’s faith in God seems at odds with her anger and distress over her multiple losses. Reasoning her way through this seems to help her to reach a point of acceptance. This could, however, be more an indicator of her own lack of power in the face of her situation than belief in God’s control: If you are supposed to get a baby, you are supposed to get it, but if you are not supposed to, only God knows why. Yes, I said that to my baby when she passed away. But it’s the only thing that left to me. When I think that I lost my job at the same times (pause) and (pause) my girl is supposed to be in school, she is not in school yet. But even that, I accept it.

Zanele is ambivalent about the role of God in the trauma. She is still trying to accommodate her beliefs so that they fit in with her experience: ‘‘It distanced me to God . . . Because you are angry: why did he let that happen? The next minute you are crying to him for comfort.’’ The fact that she has more control over her life than some of the other women (she has a job as a financial analyst, and had medical aid to use private health care for her subsequent babies) could be why she is able to articulate and live with this ambivalence. There is less urgent need for someone=something else to be in control. There are some similarities between the meaning-making challenges of the bereaved mothers and the model of restructuring identity, benefit-finding, and sense-making suggested by grief theorists (Gillies & Neimeyer, 2006; Neimeyer et al., 2010). The task of restructuring identity is evident in the women’s struggle to come to terms with losing their identity as a mother. Looking for reasons for the loss parallels with the concept of sense-making. The need to acknowledge the personhood of the baby, which is strongly evident in these narratives, is a grief task unique to perinatal loss

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(Bennet, Litz, Lee, & Maguen, 2005). The average time since loss was 20 months, which may explain why benefit-finding (which typically occurs later than sense-making; Gillies & Neimeyer, 2006) did not feature strongly in their narratives.


Factors Influencing the Loss The social circumstances under which the participants lived entered the narratives in a number of ways. These contextual factors included the role that fathers played, the presence of older women in participants’ lives, and the powerful effects of poverty. Fathers play a role in meaning-making by reinforcing ideas of motherhood and, together with the mother, acknowledging the baby as a distinct person to be mourned. Fathers’ grief impacts the mothers’ grief by validating the enormity of the loss. Zanele’s comment that ‘‘with us African women mostly, the minute you find out that you are pregnant, the partner just disappears’’ is not substantiated in the behavior of any of the men other than her own baby’s father. The fathers are a strong presence in all of the narratives. They feel excited at the pregnancy (Nosandla, Nonkululeko) and take their role seriously by giving practical support (Nontombi, Nosandla, Zodwa). Zodwa’s boyfriend stops drinking and smoking when he discovers she is pregnant. Their response to the pregnancy reinforces its meaning as a valued and significant event. The fathers all grieve for their babies in different ways. Zodwa is still angry because the hospital did not offer her distraught boyfriend counseling. He and Nosandla’s husband cry at the time of the death and afterwards. They continue to talk about the baby long after the death, as does Nontombi’s boyfriend. Nonkululeko’s boyfriend leaves her and then wants to get together again because he still regards her as the mother of his child. Bongeka’s boyfriend experiences a complicated kind of grief as he weeps and accuses her of killing his baby. The narratives of Nosandla, Zodwa, and Nontombi leave an enduring impression of couples grieving together. Their partners are part of the process of reflecting on and trying to make meaning of the loss. Some of them are part of the ongoing conversation of whom to blame for the death and the discussion on the existential reason for the loss (Nosandla, Zodwa). They play a significant role in establishing a sense of



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the child’s personhood, by buying clothes (Nosandla) during the pregnancy and talking about the baby after the death (Nosandla, Zodwa, and Nontombi). Zodwa gives some indication of the content of these conversations: ‘‘Because till today, he is speaking about the baby’s fingers and stuff; ‘that baby had your fingers.’ ’’ It is beyond the scope of this article to discuss fathers’ grief and the couples’ coconstruction of meaning. In general, it remains an aspect of perinatal loss that is under-researched. Older women play a role in meaning-making. There is an underlying presence of older women in the lives of all the mothers, giving them advice and comfort, and passing on religious or cultural norms around mourning. Both Nosandla and Zodwa drew heavily on their mothers for comfort, staying with them at times. Zanele’s mother lives in the Eastern Cape, but she phoned often after the baby’s death to talk with her. Nontombi and Nonkululeko’s mothers are both dead, but they received practical help from their aunt and stepmother, respectively. Nosandla refused counseling at the maternity hospital, because her mother is a lay counselor and wanted to speak with her. The advice she gave—to accept the loss and trust God—were central to Nosandla’s meaning-making. Some older women cautioned the younger women (Zodwa, Bongeka, and Nosandla) about speaking to the first author, in case it upsets them. Bongeka’s aunt told her to burn the photos as it is bad luck to keep pictures of a dead baby—something she bitterly regrets doing. Zodwa’s mother told her she would not fall pregnant if she kept the photo of the baby on her mobile phone, so she transferred it to her own. I asked Zodwa if this was a customary belief and she laughed and said, ‘‘I think it is an old woman being superstitious.’’ She then went on: ‘‘I deleted the photo. Soon afterwards, I fell pregnant. I don’t know why!’’ This incident is illustrative of what Nadeau (1997) called ‘‘coincidancing,’’ in which two or more people engage in ‘‘sense-making about a seemingly random event in the context of common loss’’ (Neimeyer et al., 2010, p. 77). Poverty profoundly affects the women’s grief and meaningmaking. Zanele seemed to take on the role of spokesperson in the regard: ‘‘If you can’t afford, you just have to accept things that happen to you without any explanation. That is how it is with the life we are living; if you are less fortunate, things happen to you and you don’t even understand why they happen.’’


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There were three general patterns of influence. Firstly, poverty puts pregnant women at risk of losing their babies and can exacerbate the traumatic quality of the loss. Secondly, it renders them unable to perform rituals which could provide long-lasting comfort. Thirdly, it generates a sense of helplessness. The risk the women face has as much to do with lack of choice over health care as with poverty per se. Unable to afford private care, the women are obliged to attend the obstetrics units in the townships. These are not all uncaring and inefficient, but the women’s stories point to a serious malfunctioning in the system. Abrahams, Jewkes, and Mvo (2001) provided supporting evidence for these women’s statements, as did the Save the Babies report (2010), which showed that lack of facilities, lack of skills and personnel and poor transport were the main avoidable factors in early neonatal deaths. Despite Nontombi’s insistence that something was wrong, the nurses ignored her daughter’s condition until she was critically ill. Nosandla was not allowed to deliver at the obstetrics unit despite being far into labor. Bongeka was mocked and told to go home when she came in after her membranes had ruptured. Nontombi reflects on the unreliability of these units: ‘‘I think the doctors are the best, if you can afford that’s all I can say. If you want the best for your baby, you must be prepared to go to the doctor. Don’t depend on the clinics, don’t depend on the clinics.’’ The participants in this study provided eloquent testimony to the transport difficulties women in their position face, alluded to above. They reported limited access to transport, and long waiting periods for an ambulance to take them to hospital. Nosandla and Nontombi both tell of waiting for a long time at the obstetrics unit for an ambulance to take their baby to maternity hospital. Bongeka describes her difficulty in getting to the unit, as she had no money for transport: On the way, I was like lying in the road. I was losing the energy. I walked. I walked a long way, and then I managed to get there and then I asked her to go and ask the ambulance, but they say the ambulance will take too long, and then he went to another guy who has got a car and they take me to (the obstetrics unit).

The women struggle to find out what is medically wrong with their babies, although it is not clear if this is due to inefficiency,



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lack of sympathy, or poor communication. Bongeka resorted to borrowing money to go to a doctor after her membranes had ruptured. Zanele found out from a private doctor about her incompetent cervix. Finding a concrete cause for the death is an important and often difficult part of meaning-making: the women’s financial situation exacerbates this difficulty. Lack of adequate funds also means that the women are obliged to work throughout their pregnancy, often in physically taxing jobs (Bongeka). Losing a job because of the physical strain of pregnancy can be devastating. In Nonkululeko’s case, this compounds the complicated grief she experiences after the death of her babies. Neither Nontombi nor Bongeka could afford a proper burial. Bongeka wept when she told me that, and Nontombi’s explains how difficult this is: If I had more money and buried my own child, maybe every time I miss her so much I should go to the grave and talk to her and just visit. But I couldn’t afford the funeral, I can’t do anything, I don’t even know what happened and what they did to the baby, I just don’t know anything.

Possibly losing a child when you cannot afford to ‘‘do anything’’ and ‘‘don’t know anything’’ requires different grieving strategies. Nonkululeko’s litany of ‘‘I just accept it’’ and Nontombi’s’ concluding sigh (‘‘But fine’’) could indicate that simply resigning oneself to suffering may be an adaptive way of dealing with loss when deprived circumstances restrict meaning-making. Discussion This study explored how bereaved mothers tell the stories of their loss. Because this was a cross-sectional study, we could only hope to capture something of current meaning and meaning-making processes. Interviews over time may provide a better understanding of how these women face the traumatic experience of losing a baby and explain some of the findings noted above, such as the absence of benefit-seeking. Despite the fact that the women spoke about painful issues in their second language, their often poetic use of English created


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moving and evocative accounts of their experience. The narratives reflect their struggle to make meaning of the baby’s death as they contend simultaneously with other losses and challenges related to their social and economic difficulties. Indeed, the influence of socioeconomic status (and lack of access to health care) on meaning-making comes across strongly in the narratives. In the midst of this, they are able to create an image of their baby as a real person to be mourned and grapple with understanding the reason why he or she died. In a culture where motherhood is highly valued, they try to find ways of holding onto their identity as a mother, despite the death of the baby. Their subjective experience of meaning-making is influenced by those closest to them; the baby’s father and older women who are significant in their lives. The fact that they are accustomed to hardship in no way immures them to the shattering pain of losing a baby. This loss, although one among many, engenders an ongoing search for meaning and integration. Three areas of further research are suggested by these findings. Firstly, the grief of fathers and the way couples grieve together is an under-explored area. Secondly, it appears that emotional support offered to bereaved mothers by state health care services is not always adequate. A focused investigation into this may help planning more appropriate interventions. Thirdly, the effect on poverty stressors on parents’ grief is little understood. Insight into this could contribute to more effective ways of supporting bereaved mothers. How can this study be useful to our understanding of these devastating events in women’s lives? This is a virtually unexplored area of study in a sample of vulnerable women who are seldom the focus of this kind of research, and that in itself is valuable. In the approach we followed, they were allowed to construct their own narrative with as little prompting and few preconceptions as possible. We believe it allowed us to capture what was unique in these women’s meaning-making efforts, while at the same time drawing parallels with findings from other research as well. Of course, in the end, we did interfere to some extent, in at least coconstructing a reframing of how the women portrayed these very difficult experiences. The findings of the study finally have obvious consequences for the health care system, and the frontline medical personnel who interact with women at times like these. We give


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the last word to Zodwa, who, trailing off into a pronounced shrug, said: You know, I don’t know whether people take it lightly or not, but losing a child is a very big deal. I don’t know whether, since they think you don’t know the child and you don’t see the child, but the after effects of them not knowing how to deal with a situation like that, it does great . . .


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