Mourning the Dreams

How Parents Create Meaning from Miscarriage, Stillbirth, and Early Infant Death

Claudia Malacrida

• Publisher: Routledge
• Year: 2016
• Print ISBN:
  9781598742879
• eBook ISBN:
  9781315424316
• Topic: Social Sciences
• Subtopic: Social Psychology
• Index: Social Sciences

Mourning the Dreams is an accessible and moving account of parents' experiences of grief and recovery after losing an infant during pregnancy, childbirth, or within the first month of life. Drawing from the sociology of emotions, health research and psychology, her own experience, and a range of qualitative methods, Claudia Malacrida finds that bereaved parents not only grieve their child and its unrealized potential, but often find their personal experiences are at odds with social forces and prevailing assumptions about the nature of their loss and how they should react to is. She explores the meanings parents create as they face denial, silence, and other reactions from friends, family, communities, coworkers, the medical community, and even within spousal relationships. She also describes the courage and creativity of parents who create and negotiate meanings that help them grieve, recover, and manage relationships.

1Chapter 1

Why is Perinatal Loss So Painful?

Before attempting to understand how parents create sense or meaning out of their losses, I felt it was critical to understand the nature of those losses. What is it about perinatal loss that is so powerful? What is particular to perinatal loss that makes grief so poignant and recovery so difficult? My search of the literature was extensive—I found insights that fleshed out the answers to these questions in medical sociology, in thanatology, in the sociology of the emotions, in social work and psychology, in feminist writing, and in medical books on the topic. As discussed below, I have borrowed from all of these traditions, but particularly I have used Kenneth J. Doka’s (1987, 1989) work on disenfranchised grief and Therese A. Rando’s (1984, 1992, 1993) work on complicated mourning as a model to guide my inquiry.

It is important for me to note that part of my desire to do this research rested on my personal need for legitimation—my own need to know that my experience was not abnormal. In undertaking this project, I felt a compelling need to find something outside of myself that might account for the devastation I experienced. My fear was that if I failed to find anything in the varied bodies of literature I explored that would illuminate the complexity and profundity of perinatal loss the logical conclusion would be that there was something wrong with me for having been so deeply affected by my losses. My literature search on the topic led me to conclude that in fact little has been written that directly explains the breadth and depth of perinatal grief 2adequately. Subsequently, I have drawn on a wide-ranging variety of sources to guide my thinking.

PERINATAL LOSS LITERATURE

Literature dealing directly with perinatal loss generally falls into two categories: medical approaches and mental health treatments. Medical approaches toward perinatal loss often make recommendations to caregivers on how best to “manage” the loss experience within the hospital setting. These recommendations include providing as many infant artifacts as possible, encouraging contact with the babies, providing extra hospital support for parents, and encouraging the study of long-term parental needs (Taner Leff, 1987, p. 111). Another medical approach describes normal and abnormal pregnancy, comparing abnormal pregnancies to normal ones, and explaining what can go wrong with a pregnancy. Some authors offer insight into what to expect physically and, to a lesser extent, emotionally following perinatal loss, ending with recommendations on how to proceed with subsequent pregnancies (Lovell, 1983; Oakley, McPherson, & Roberts, 1984; Schwiebert & Kirk, 1989). While this literature is extremely useful in answering parents’ questions about why perinatal loss happens or how to reduce subsequent risks, it does little to shed light on the profound nature of postloss grief.

Mental health writing on perinatal loss does address the nature of parental grief following perinatal loss, yet often, it fails to provide an analysis of the particularities that contribute to that grief. Mental health research has assessed the sympathy of health professionals towards miscarriage patients (Hai & Sullivan, 1982/1983), the effects of attending support groups on specific measures of psychosocial adjustment (Videka-Sherman & Lieberman, 1985), the nature and efficacy of the therapeutic helping relationship within married couples (Smart, 1992), and the role of religious commitment in achieving psychological adjustment (Cook & Wimberly, 1983). Typically, articles conclude with or consist primarily of recommendations for therapeutic interventions that will facilitate parental grief resolution (for example, Malcolm & Wooten, 1984; Rappaport, 1981). Such recommendations often include many of the same measures called for in the medical literature (e.g., allowing time for parental contact with the infant, provision of infant artifacts) and often provide guidelines for caregivers on such topics as making funeral recommendations to parents, providing advice on autopsy decisions, and recommending follow-up counselling to bereaved parents.

The findings and recommendations of the mental health literature are no more to be faulted than those of the medical literature, yet they shed little 3light on why perinatal grief, in particular, requires such measures. The lack of social support in parents’ normal support systems, the ambiguity of medical and institutional responses to the death, and the varied secondary losses that necessitate counselling are not laid out in great detail. Rather, therapeutic measures are recommended in response to clinical experiences that have simply indicated that bereaved parents need special attention.

Some social science research does provide insight into underlying assumptions regarding perinatal loss. Shulamit Reinharz (1988) has explored some of the crosscultural meanings that have been attributed to perinatal loss. These include views of miscarriage as a symbol of failed maternal virtue, of failed womanhood, and as a test of character. The implication is that women are held liable for pregnancy loss through their lack of virtue or their inadequacy as women and that failure to give birth to a living child is a lesson necessary to character development. Reinharz also provides an analysis of some ways that miscarriage lore may act to restrict women’s activities and emotions. The inference is that mothers are responsible for pregnancy loss because they undertake too much (or not enough) activity or because they invest excessive (or insufficient) emotion in their pregnancies. In any case, the underlying message is that mothers somehow invite perinatal loss through their own failings.

Historical and cultural contexts of perinatal loss have been explored by Letherby (1993), who postulates that perinatal loss has become more difficult in modern culture. She argues that lower infant mortality rates mean that modern, Western women no longer expect their children to die and hence are willing to form bonds to them at earlier stages of life. At the same time, increased availability of reproductive control means women are now more likely to focus on choosing rather than preventing pregnancy, presumably resulting in less ambivalence when they become pregnant. Finally, the increasing medicalization of pregnancy and childbirth has meant that women expect the pregnancies that they do choose to end successfully. These factors together form a modern concept of pregnancy as a selectable, manageable, and predictable undertaking. This, in turn, fosters unrealistic expectations of success in reproductive matters (Letherby, 1993).

Miscarriage and stillbirth have also become medical events, reducing the support that might have occurred in the past when women were tended by other community members who likely understood their experience of loss either through their own miscarriages or by attending other women’s losses (Letherby, 1993). Layne (1992, p. 34) explores the implications of new reproductive technologies such as pregnancy tests, ultrasounds and amniocentesis that offer “the scientific determination of pregnancy before the sensation of fetal movement” and facilitate earlier and earlier parent-infant bonding by 4determining the sex of children before birth and offering visual connections to the baby in utero. The promise of these technologies interacts with a general tendency of medicine and the media to underreport pregnancy loss and overreport technology’s “miracle babies,” leaving both physicians and parents feeling that “it is they (not the technologies) who have failed if a neonate dies” (Layne, 1992, pp. 33–37). The belief that pregnancy is now typically safe and successful, combined with the hospital experience of perinatal loss that isolates women from other community members who might share their experience, can leave parents with an understanding that theirs is a personal failing and a private misfortune.

Layne’s (1990) anthropological approach describes pregnancy as a rite of passage and pregnancy loss as an incomplete rite of passage that leaves parents without any status as fathers or mothers. She sees this as a major thrust behind parent support groups’ struggles to define the embryo, foetus, or neonate as a child, in opposition to medical ascriptions of their infants as “fetal waste” or “products of conception.” The struggle to define the baby as a real child is tied to struggles by mourners to claim the status of parents and to name their loss as a death. Layne points out that miscarried and stillborn babies are often not accorded funerals but continue to be disposed of by the hospital, a clear statement of the devalued status of perinatal deaths. For parents, this struggle is a social one, aimed at achieving acknowledgment and recognition that their status has indeed changed; they now are not only parents, but parents of a child who has died.

SOURCES OUTSIDE OF PERINATAL LOSS LITERATURE

Often, the topic of perinatal loss is subsumed in research that deals directly with other fields of study, again, without necessarily acknowledging the particularities that confront parents suffering through perinatal loss. Related sources include research on motherhood, the family, and pronatalism; thanatology; grief literature; and complicated mourning. Many of the themes in these research areas provide insight into why perinatal grief is problematic.

Motherhood, the family, and pronatalism

Literature dealing with the ideologies of the family can lend insight into why parents choose to have children, and hence, why losing a child can be so poignant. Rather than see motherhood as an instinctual drive, Elisabeth Badinter (1980), a French feminist historian, analyzes mothering practices across time. She ties the social imperative of “good mothering” to the publication of Rousseau’s Emile and traces shifts in childrearing and burial 5practices to support her claims. Mother love as we presently know it is a social construct, shifting with the fashions of family structure across time and place (Badinter, 1980). In analyzing modern, Western attitudes towards children, Gittins (1993) believes that economic factors are not adequate explanations for bearing children; rather, she claims the bearing of children is a status passage; women only become “real” women, socially recognized as adults, when they become mothers. She also discusses the theme of power as a positive attribute of mothering, claiming that women in particular are often able to exercise power in only this area of their lives. Finally, parents desire children to “continue their line” and to provide some security (both financially and against loneliness) for themselves in old age. Logically, the loss of an infant could represent a loss of status as a “real” adults, loss of the potential power to be gained through mothering, loss of future comfort against loneliness, and loss of a route toward immortality through one’s children (Gittins, 1993).

Veevers (1980) discusses some dominant cultural themes regarding family. In her study of couples who choose not to have children, she found many people encountered pronatalism. Pronatalism includes the belief that married people not only should have children, but should want to have them. The social meaning of parenthood is that being a parent is a highly moral activity; that being a parent is a civic responsibility; that parenthood is a part of being married; that desire for parenthood represents acceptance of one’s gender role, that is, being a mother is proof of one’s femininity; and finally, that desire for parenthood is a sign of normal mental health (Veevers, 1980, p. 4). With parenthood being so socially and morally charged, it is possible that “failed” parenthood will be interpreted in equally powerful terms both by parents and by those who surround them.

Thanatology

Thanatology, or the study of death, also sheds light indirectly on perinatal loss. A major theme in thanatology considers the denial and silence surrounding death in modern, Western culture, resulting in the fear and shame of death (Littlewood, 1993, p. 69). The old, Victorian ideal of the “good death,” where the dying person, surrounded by loved ones, passed serenely over to a life of peace and joy at God’s side, is gone. Victorian practices of mourning, which gave clear instructions about how, where, and when to mourn for all members of the community, have disappeared as well (Aries, 1985, p. 309). Mourners in modern times are left without internalized grieving rules and without public rituals to support and guide their feelings. In 6the case of a perinatal death, there is even less public support for grief because the death of a yet-to-be-born child is not a “social death.”

Social death refers to the loss of an individual to the community, to society, and to living others (Mulkay, 1993). A social death can be independent of a biological death, for example, when an ailing individual detaches more and more from his/her society and his/her presence (and hence loss) becomes increasingly less salient to community members. In a reversal of Mulkay’s concept, the physical death of a preterm infant often occurs independently of a social death since a preterm infant is often socially salient only to parents. Thus, parental grief often occurs in a social vacuum, without the acknowledgement or support from others to whom the loss is not socially “real.”

The configuration of the modern, nuclear family has also affected how one experiences grief. Because we live in a mobile, individualistic society, we are often situated in relatively few, intense relationships and have access to fewer and fewer people who share our stories, our joys, or our sorrows. As well, grief is often viewed as a private affair, so even in the case of social deaths, once the funeral is over, mourners are left with few supports for their grief (Charmaz, 1980, p. 281).

Studies focusing on children’s deaths offer further insight into perinatal loss. As well as some of the more pronatalist or societal factors suggested above, there are some very personal and private reasons for parents to mourn the death of an infant. Children act as links to parents’ own pasts and to their futures, providing insight into and forgiveness of one’s own childhood while offering the promise that parents may be able to make amends or fulfill their dreams through their children (Arnold-Hagan & Buschman, 1983). With a baby (perhaps even more so with a yet-to-be-born baby), the struggles with and flaws of the actual child are not yet apparent, but the dream and the emotional investments remain. Arnold-Hagan and Buschman (1983) describe the parent-infant relationship as being particularly special, providing parents with the opportunity to give love unconditionally; to exercise control; to build self-esteem; to accomplish something meaningful; to have a reason to live; and, finally, to have something that is solely one’s own. The death of an infant robs parents of these opportunities, dreams, and potential roles.

Sociology of emotions

The sociological study of emotions “articulates the links between cultural ideals, and...the way we wish we felt, the way we try to feel, the way we feel, the way we show what we feel, and the way we...make sense of what we feel” (Hochschild, 1987, p. 117). Historical approaches in the sociology of emotions have found that the distributions of specific emotions (such as grief, jealousy, 7and love) have varied with historical, cultural, and structural shifts (Thoits, 1987, p. 174). The qualities of these variations have been explored at the micro-level, often from a symbolic interactionist perspective. Symbolic interactionists who study the sociology of emotions argue that our feelings are tied not only to subjective experience, but that they exist as a result of our ability to be influenced by others and to respond to those influences. People actively interpret the reactions and behaviors of others to explain and define the significance of their own physiological states (Palmer, 1991). Thus, the subjective feelings that we have and express are labeled, supported, reflected, diminished, or denied by others, and we in turn alter our subjective feelings in reaction to the responses of others.

Arlie Hochschild (1983) has studied emotional labor in the workplace, but many of her concepts apply to the private sphere as well. Emotional labor refers to the acts that one must perform to induce or suppress one’s own feeling in order to sustain the outward appearance that will elicit desired responses and assessments from others (Hochschild, 1983, p. 7). Emotional labor is the handling or working up of one’s own emotion in order to achieve, in the Marxist sense, exchange value. Some examples of exchange value that might accrue to “properly” grieving parents could include being perceived as courageous in the face of difficulty, gaining social status by acting sensibly, being (ap)praised as strong because one is “getting on with one’s life.” According to Hochschild, feelings are governed by feeling rules or commonly held understandings of what is owed and owing in emotional interaction. As Hochschild (1983) states, “we can offend against a feeling rule when we grieve too much or too little” (p. 64).

Parents whose loss is not social and whose grief is hence not seen as legitimate often find themselves offending against commonly held feeling rules. Parents are continually told how they should and should not feel, and yet those feeling rules come into harsh juxtaposition with their actual emotions. Hochschild (1983) states that actors engage in emotional labor to manage their outward expression of feeling and perform emotion work to actively manage their subjective feelings as well. This manipulation of our own feelings is guided by latent feeling rules, rules which are internalized and which tell us what we “should” feel and what we are entitled to feel. Parental emotion work, thus, becomes a rearranging of parents’ subjective experiences so that they line up with publicly-held and privately internalized versions of what bereaved parents “should” and “should not” feel. The burden of this additional emotion work makes perinatal grief particularly poignant.

Related to the social construction of grief is the concept of disenfranchised grief, where an individual experiences a subjective sense of loss “but does not have a socially recognized right, role, or capacity to grieve” (Doka, 81987). According to Doka, society has fairly consensual grieving rules that set out who, when, where, how, how long, and for whom people should grieve. He outlines three reasons why grief is disenfranchised: because the relationship is not recognized (as in the case of lovers and mistresses of deceased persons); because the loss is not recognized (as in the case of secret losses such as adopting out a child or socially insignificant losses such as a pregnancy loss); and finally, because the griever is not recognized (as in the case of mentally handicapped people who may be perceived to be incapable of understanding the loss) (Doka, 1989). Perinatal grief becomes disenfranchised primarily because the loss is not recognized or socially significant.

According to Doka, disenfranchised grief is paradoxical. Although the purpose of disenfranchising another’s grief is to negate and delegitimate grief feelings, the circumstances of disenfranchisement actually complicate and intensify feelings of grief. Feelings of loss become compounded by feelings of shame, isolation, and alienation from traditional sources of solace, such as planning and attending funeral rituals, access to religious rites such as baptisms, “working through” grief publicly with family members, and being entitled to bereavement leave or insurance benefits (Doka, 1987).

Grief literature

The above discussion sheds some light on personal beliefs and attitudes of parents that might make perinatal grieving difficult, and it begins to paint a picture of how social and public responses might further add to difficulties in grieving. A third aspect particular to perinatal loss is the actual nature of death. I am arguing that perinatal death fulfills all the attributes of t...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• Dedication
• Acknowledgements
• Preface The Quest Begins
• Chapter 1 Why is Perinatal Loss So Painful?
• Chapter 2 How Perinatal Loss is Experienced
• Chapter 3 What Can Go Wrong (Often) Does: Psychological Factors and Perinatal Death
• Chapter 4 Silence and Empty Arms: Social Factors in Perinatal Death
• Chapter 5 Giving Death: The Body and Perinatal Loss
• Chapter 6 Creating Meaning, Experiencing Growth
• Chapter 7 Research as Therapeutic Process: For Participants and Researcher Alike
• Chapter 8 Epilogue
• Appendix A Methods—Investigating Perinatal Grief
• Appendix B Interview Guide for Semi-Structured Interviews
• Bibliography
• Index