Chapter 42 Grief and loss during childbearing — the death of a baby
Learning outcomes for this chapter are:
1. To discuss the importance of reflection and self-awareness as tools which midwives use to underpin their midwifery practice with bereaved women
2. To explore some of the feelings, thoughts and behaviours that women and their family members may have after the death of a baby
3. To describe and discuss selected perspectives of grief and bereavement which may assist midwives to work with families
4. To highlight that the complexity and individuality of grief, combined with limited evidence about the effectiveness of bereavement interventions, preclude a ‘one size fits all’ approach to bereavement care
5. To provide definitions relating to fetal and infant deaths
6. To outline the legislative requirements that midwives must adhere to when a baby dies
7. To identify principles and strategies that midwives can use as part of a toolkit to work with bereaved women and their families
8. To consider the ways in which self-awareness and resilience can enable midwives to sustain working with bereaved families.
The public expectation in developed countries is that pregnancy leads to the birth of a live and healthy baby. The reality is that this is not always the case—pregnancies miscarry, fetuses develop with inherited disorders, and babies are born prematurely or die. In each situation women experience loss which ripples through their family, friends and community. In this chapter we explore selected theoretical frameworks which can provide a basis for midwives to confidently provide sensitive, individualised care to women experiencing bereavement, loss and grief. These concepts have different meanings for different people; the interpretation is that we have used in this chapter outlined in the Box 42.1.
Box 42.1 Definitions—concepts of bereavement
• Bereavement—the event and experience of someone dying or something of importance being removed. It is useful to note that while ‘bereavement’ is generally associated with the death of a significant other, it was derived from the old English ‘be-reave’ meaning to be deprived of something in general (New Oxford Dictionary of English 1998.)
• Grieving—how individuals respond and live with the bereavement.
• Mourning—the behaviour, often displayed publicly, after the bereavement.
INTRODUCTION
Amanda’s and Leona’s comments set the scene for this chapter, which deals with situations when things do not turn out as expected by women, their families and midwives. Instead, the woman’s world may be turned upside down.
Chapter 11 explores the transition which pregnancy brings as women move from life ‘as it was’ and dream towards the ‘life that will be’ after the arrival of the baby. Loss can occur in a wide range of situations, such as when:
• a baby is born prematurely and the parents lose some of the opportunity to prepare for the baby’s arrival
• a pregnancy miscarries at 12 weeks, bringing the loss of a pregancy full-term
• antenatal screening identifies that a fetus has trisomy 21 and brings loss of a ‘straightforward pregnancy’ because there are now decisions to be made about continuing or ending the pregnancy
• a baby is stillborn and parents lose the future that they planned for this child.
It is beyond the scope of this chapter to discuss all of the events where bereavement can occur during pregnancy and childbirth, We concentrate on:
• therapeutic termination of pregnancy(TOP)
• sudden unexpected death in infancy (SUDI; another acronym used is SIDS, sudden infant death syndrome).
We have not reviewed the physical care associated with these situations. This can be found in other areas of this textbook, for example Chapters 36 and 40, and in the Further reading, particularly Warland (2000).
The chapter is divided into the following sections:
• How often and when do babies die? (rates and definitions)
• What are our personal beliefs about grief and loss?
• What are some of the seminal theories which shape the views of grief that are held by women, healthcare professionals and the community?
• How can midwives tailor their practice to work with different women and family members, including partners, children and grandparents?
We make no claim that there are ‘right’ ways of providing care, particularly given the limited evidence about the effectiveness of bereavement interventions. We gratefully acknowledge the contributions that people’s quotes and stories have made to this chapter. We recognise that these are their perspectives and there are many other experiences which are not included in our discussion.
RATES AND DEFINITIONS
How much is caring for bereaved families a part of midwifery practice? How many babies die? What are the legislative requirements relating to the death of a baby? Box 42.2 and Tables 42.1 to 42.3 give some of the key facts; see also Chapter 36.
Box 42.2 Definitions—mortality
• Miscarriage—baby born dead before 21st week of pregnancy, or weighing <400 g.
• Therapeutic termination of pregnancy (TOP)—pregnancy medically terminated for reasons as decreed by a country’s legal system, e.g. fetal abnormality incompatible with viability/reasonable quality of life; maternal mental health significantly threatened. Fetus dies during process or shortly after, usually.
• Stillbirth—baby born after 20 completed weeks gestation, or birthweight ≥400 g, who shows no sign of life at birth. Also termed ‘fetal death’.
• Sudden unexpected death in infancy (SUDI), previously sudden infant death syndrome (SIDS)—death of a neonate or an infant where the postmortem fails to diagnose cause of death. Some of these can occur in the first six weeks after birth
• Infant mortality rate—rate per 1000 live births, of deaths of babies from birth to one year of age.
Table 42.1 Mortality rates (per year) in Australia and New Zealand
| Australia | New Zealand | |
|---|---|---|
| Miscarriage | Varies. Best estimate is 15% to 25% of all pregnancies | |
| Therapeutic termination of pregnancy (TOP) | General rate per 1000 women of childbearing age 15 to 44 years1 | |
| 20041: 19.3 | 2007: 20.1 | |
| Stillbirth | Number of fetal deaths × 1000 divided by total births (live and fetal deaths): | |
| 2003: 7.1 2004: 7.5 2005: 7.3 (NPDC)2 | 2003: 6.9 2004: 8.5 2005: 6.83 | |
| Infant mortality rate | Per 1000 live births, of deaths of babies from birth to one year of age: | |
| 2003: 4.8 2004: 4.7 2005: 5.0 | 2003: 5.4 2004: 5.9 2005: 5.03 | |
| SUDI/SIDS | Per 1000 live births, of deaths of babies from birth to one year of age: | |
| 2003: 0.3 2004: 0.2 2005: 0.3 | 2003: 0.9 2004: 0.8 2005: 0.72 | |
| Perinatal mortality rate | Rate of babies who die from age 20 weeks gestation to 28 days after birth, per 1000 live and stillborn babies | Rate of babies who die from age 20 weeks gestation (or 400 g birthweight) to 168 completed hours (7 days) after birth (early neonatal deaths), per 1000 live and stillborn babies |
| 2003: 10.1 2004: 10.5 2005: 10.5 (NPSU) | 2003: 9.4 2004: 11.2 2005: 9.32 | |
NPDC = National Perinatal Data Collection; SIDS = sudden infant death syndrome; SUDI = sudden unexpected death in infancy.
1 Abortion Supervisory Committee 2008
(Sources: Births, Deaths and Marriages Registration Act [NZ], 1995; Laws et al 2007; NZHIS 2007)
Table 42.2 Legislative requirements of Australian midwives involved with the death of a baby
| Miscarriage | The birth does not need to be registered. The legal role of the midwife varies from state to state. Example: Western Australia (WA) has a multidisciplinary approach. Midwives are part of a team which includes an obstetrician, GP, social worker and chaplain. Consent is required for funeral arrangements such as cremation at the hospital and return of ashes, or internment in a memorial garden; there is an option for families to take the baby home and bury, whereby a disclaimer is required.1 |
| Therapeutic termination | After 20 weeks gestation, the birth needs to be registered and a Medical Certificate of Cause of Death needs to be completed. If the baby is born alive at any gestation, including termination, even if the only sign of life is a pulsing cord, a Notification of Birth for Registration must be completed by the parents. |
| Stillbirth | If a Medical Certificate of Cause of Death has been issued and if the coroner is not involved, then a Notification of Birth for Registration which includes acknowledgement of the baby’s death (stillbirth) is completed by the parents. The certificate must be completed by a medical officer, or coroner if it is a coronial case. |
| Neonatal death | The birth must be registered as must the death. If the coroner is not involved then a Medical Certificate of Cause of Death must be completed by a medical officer. A Notification of Death for Registration is completed by the parents or their representative, e.g. funeral director, within three working days after disposal of the body. |
1 Personal communication from Belinda Jennings, Clinical Midwife Consultant, KEMH, Perth.
Table 42.3 Legislative requirements of New Zealand midwives involved with the death of a baby
| Miscarriage | Neither a birth or a death needs to be registered. The midwife advises the family that the baby may be cremated or buried, or disposed of by the hospital (may be incinerated or cremated). If the baby is being buried at a cemetery or being cremated, the midwife writes a letter for the family confirming that the baby’s death was defined as miscarriage. |
| Therapeutic termination | After 20 weeks gestation, the birth needs to be registered and a Medical Certificate of Cause of Death needs to be completed. If the baby is born alive at any gestation, including termination, even if only the sign of life is a pulsing cord, a Notification of Birth for Registration (BDM27) must be completed by the parents. |
| Stillbirth | Either the ‘occupier’ of the hospital or the midwife must notify Births, Deaths & Marriages (BD&M) of the stillbirth, within five working days (BDM9). A Medical Certificate of Cause of Fetal and Neonatal Death (BDM167) must be completed by the midwife or doctor, or a Coroner’s Order must be issued. If a Medical Certificate of Cause of Death has been issued, i.e. if the Coroner is not involved, then a Notification of Birth for Registration (BDM27), which includes acknowledgement of the baby’s death (stillbirth), is completed by the parents. |
| Neonatal death | The midwife must notify BD&M of the birth. If the baby subsequently dies at any age, and the Coroner is not involved, i.e. Medical Certificate of Cause of Death has been completed, a Notification of Death for Registration (BDM28) is completed by the parents or their representative, e.g. midwife or funeral director, within three working days after disposal of the body. |
(Sources: Births, Deaths and Marriages Registration Act [NZ] 1995; Burial and Cremation Act [NZ] 1964)
BELIEFS SHAPING GRIEF AFTER A BABY DIES
In some situations grief is not just constrained by others’ expectations, it is not acknowledged at all. Doka (1989, p 4) described disenfranchised grief as ‘a loss that is not or cannot be openly acknowledged, publicly mourned or socially supported’. Examples include societal views which place little value on the loss of life when a pregnancy miscarries (‘you can have another one’) and the stories of forbidden grief in Tonkin’s (1998) book Still life. There is also the subtle overlooking or diminishing of fathers’ and grandparents’ grief by only asking: ‘How is the mother?’, thus focusing on the woman as the primary legitimate griever. After her grandson, Jordan, was stillborn, Jenny said: ‘[I want] to be acknowledged by “society and the media” to be suffering a great loss. Not just accepted as a “tower of strength” for everyone else as “the bottomless pit of experience” to be drawn on at will’ (Dent & Stewart 2004, p 102).
Reflective exercise
• return to it over several weeks at quiet times
• record your thoughts in your journal
• talk about some aspects with a friend, colleague or professional supervisor.
1. Think about a situation where you ‘lost’ something. It does not need to be a person; it might just be a set of keys or your bankcard.
2. What are your thoughts about your own death?
3. How has the death of a family member or a friend affected you? What is the story that you would tell about this death and the effect it has had for you in terms of feelings, how you coped, who helped you?
4. What are the practices/rituals that you have taken part in, after the death of a person?
PERSPECTIVES OF BEREAVEMENT
Critical thinking exercise
Next, we want you to revisit your reflections from the box above, having:
• read the section ‘Perspectives of bereavement’
• read some stories written by bereaved parents (some examples are listed at the end of the chapter).
1. What are the differences between your beliefs and the experiences of others?
2. What insights have you gained from reading about other perspectives of bereavement?
pairs of spectacles, which provides different ways of understanding and working with bereaved women.
The story opposite highlights the ripple of bereavement which extends through a family and community when a baby dies. Mary experienced her grief differently to her mother, and to her partner. Riches and Dawson (2000) researched the experiences of 50 British bereaved parents and siblings, titling their book Intimate Loneliness because, within a family, there may be times when different members feel unsupported by each other.
In addition, the death of a baby is often sudden and, to some degree, unexpected. This can intensify grief, with ‘the shattering of the person’s normal world and the existence of concurrent crises and secondary losses [such as changed family roles and routines]’ (Doka 1996, p 11).
Descriptions of grief
Some of these are described briefly in the next section.
Feelings and thoughts
Mothers, fathers, partners, siblings and grandparents encounter a myriad of feelings which one bereaved mother described as a ‘kaleidoscope which swirled and twisted between anger, despair, exhaustion, guilt, frustration, hatred for the world in which this had happened,
Box 42.3 Types of feelings and thoughts
Family members may experience a wide range of feelings and thoughts after the death of a baby:
hopelessness, hope that things would improve, love for family and friends who gave support’.
When parents are told about the death of their baby, many describe a sense of shock and disbelief, feelings that this ‘was a mistake’ and ‘I would wake up in a minute’. Those who feel anger may turn that anger inwards, or outwards towards the midwife and other professionals. This may reflect the depth of the hurt and sense of injustice: ‘Why has this happened to me?’ ‘Someone must be to blame’. Some parents describe feelings of guilt and self-reproach—constantly revisiting their actions: ‘If I had done this, or this, would she have lived?’ Barr and Cacciatore (2007–08) found that shame, guilt, envy and jealousy made unique contributions to the experience of maternal grief after perinatal death.
Grandparents describe similar experiences of grief, yet have been called the ‘forgotten grievers’ (Gyulay 1975; Ponzetti & Johnson 1991). As Jenny describes, eight months after her firstborn grandchild’s death, she felt intense pain and confusion about her own identity as a grandmother.
I feel a double pain. The despair of seeing my own child suffering so bad and also the hollow emptiness of a grandmother whose dreams of holding and nursing her daughter’s baby are going unfulfilled. I call myself Jordan’s nanny, but then a voice in my head says, ‘You’re not really a nanny yet’. But part of me says ‘I am!’ So what am I? Where do we go from here? The ‘bottom line’ is I feel so many things, but mainly I feel confused and isolated in my grief and still carrying so much pain. (Dent & Stewart 2004, p 93)
Death of a baby or grandchild may uncover memories and pain from other losses, just as layers of onion skin are removed to reveal yet deeper layers.
The effect on brothers and sisters should never be underestimated. Many adults think that children do not grieve because they do not understand what is happening; Riches and Dawson (2000) were repeatedly told by bereaved siblings that they felt overlooked. However, even a young child is sensitive to the levels of stress within the family and experiences bereavement differently. Many will not have met the baby alive and are unsettled by the changes to their everyday routine. Depending on age, they may struggle to understand or talk about what is happening because they are still learning to talk and share ideas. This makes them vulnerable to feeling significantly distressed within a world that has turned upside down.
Many studies confirm that siblings experience a range of feelings (e.g. Silverman 2000; Worden 1996). Christ (2000) found that, when aged 3–5 years, children had sad and angry feelings that lasted for months; as they grew older, these feelings were still present but might not be shared with others. Younger children may have thoughts that they somehow magically caused the death of the baby. It can help for parents to appreciate that bereaved siblings may:
The dynamic nature of grief
The popular beliefs in the community about ‘going through stages’ and ‘grief work’ arose from research identifying the predominant characteristics of phases or stages of grief. Hence, bereavement interventions were designed to assist bereaved people to ‘progress’ through the stages. Box 42.4 lists three of the stage, phase, process and task frameworks. While the terminology differs, there is a common theme of change.
• Kubler-Ross’s work (1969) proposed stages of dying derived from work with terminally ill American adults.
• Parkes (1972, 1993) worked with widowed spouses and psychiatric patients in London and Harvard studies.
• Worden (1991, 1996) drew on his practice and research as an American psychiatrist.
Notwithstanding this caveat, these models serve to remind us that grief is not a constant state nor a linear process; rather it is a fluctuating state with movement back and forth. However, we cannot assume that theories and frameworks can be applied to predict, or neatly categorise, the responses of all bereaved people. Otherwise what was initially a description of grief becomes a prescription (Walter 1999) of what people are expected to experience
Critical thinking exercise
1. What, if any, differences do you think that differing countries of origin for sample groups (e.g. United States and United Kingdom) might have on research findings about bereavement stages and phases?
2. What, if any, differences do you think might different types of bereavement event (e.g. death of a spouse, death of a baby) have on the findings about bereavement frameworks? On stages proffered by such frameworks?
3. When looking at the terms used to describe different stages and tasks of grief, what do you perceive as the differences between these frameworks?
Bereavement as a crisis
Bereavement has often been described as a crisis which brings challenges that exceed the coping ability of the person. Caplan (1964), a psychiatrist, concluded that people need to use resources to find new ways of responding to the situation, to move through the crisis. Riches and Dawson (2000, p 16), in their work with bereaved parents and siblings, presented a similar view:
From their research, Riches and Dawson(2000) proposed that bereaved family members actively use three resources for their grieving:
1. Personal resources, which include the individual’s own philosophy about the world and what is important; previous experiences; personality; and preferred coping strategies such as talking about feelings (or not). An example of this is found in the research of Martin (1998) who interviewed 21 parents of SIDS babies in the United States. She found that some parents ‘fitted’ the death into their existing worldview, whether based on religious beliefs or personal philosophy. One grandmother described her own view of life: ‘Why did it have to be Conor? That’s life and you have to accept it, regardless of who it is or what it is. I’ve always had that sort of philosophy, “If you can’t change it, accept it”. So you have to accept things’ (Stewart 2000, p 2 81).
2. Social resources, which include the networks, roles and relationships which provide support and information. Social resources include people such as partners, parents, friends, neighbours, work colleagues, other bereaved people at a mutual help group and healthcare professionals. As Mary described, there are some friends prepared to support families and there are others who avoid any contact, possibly because of their own discomfort. Riches and Dawson (2000) found that parents often derived support from each other when negotiating the meaning of the death for their lives. This may include sharing experiences within mutual help groups (Riches & Dawson 1996, 1997; Worden 1991), whether in face-to-face meetings or through internet chat-rooms, remembrance books and blogs. Printed resources include books written by parents (e.g. Gatenby 1998) and grief workbooks from professionals such as Caplan and Lang (1995), Heaney (2002a, 2002b) and Murray (1993). The important message for women and their families is that all these resources present many frameworks and worldviews, some—or none—of which may fit with their own personal values and experience.
3. Cultural resources, which include surrounding societal beliefs, values, rituals and assumptions about the world, including views on death and grieving.
There are cultural norms in mainstream society, such as:
• the support which families, communities and the healthcare system are expected (or not) to provide when a death occurs
• whether it is appropriate for children to attend a funeral
Gendered views of grief are an important aspect of cultural resources and constraints. Do men and women grieve differently? Studies have explored differences between parents (e.g. Vance et al 1995), and some have identified that bereaved mothers grieve more than fathers (e.g. Dyregrov & Matthieson 1987; Lang & Gottlieb 1993). However, this depends on the tools used to measure grief, and may reflect the societal expectation that men do not talk about their feelings; which in turn may mean that they are judged as grieving less (Finkbeiner 1996). Indeed, Montigny and colleages (1999) found that bereaved fathers would like the opportunity to have their bereavement recognised by others, implying at least as equal a need to grieve.
