Loss of a Child
Loss of a child is regarded as the most difficult loss to bear - Loss of a Child introduction. Most parents have very vivid memories of their baby’s death and all the events surrounding it. Years, even a lifetime later many can still clearly remember the details of what happened, what was said and done, and what they thought and felt. Particular sights or sounds or smells can bring the memories flooding back. In the weeks and months immediately after their baby’s death, parents often use their memories to re-live their experience over and over again. Doing this is sad and painful, but it can also be helpful and is a part of grieving. Some parents write down everything that happened; some talk about it; some simply re-live their experiences in their thoughts.
After their baby’s death, parents grieve for the baby they have lost, and for all that their baby meant to them. They also grieve for a lost future – their baby’s future, their own future as their baby’s parents, and the future they would have shared as a family. They grieve because they have lost an expected happiness. Many feel that they have also lost hope. Grief is, for everyone, this acute, overwhelming sense of loss, a feeling of emptiness and a great longing for what has been taken away. Parents long for their baby to hold, to cuddle, to feed, to care for, and most of all, to love. It can be difficult to believe that such intense longing will never be fulfilled and that what is wanted and needed so much can never be had. Coming to grasp the permanence of loss is very hard, and once grasped, it is very painful. Death of a child is particularly shocking when it occurs suddenly or unexpectedly, as in a fatal accident or an illness of sudden onset, and the parents have no opportunity to prepare psychologically for the loss. However, a long period of anticipatory grieving, as when death occurs after a prolonged chronic illness, is often more prognostic of poor recuperation by the parents than when the dying trajectory and hence the anticipatory grieving period are shorter.
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Along with the pain and sadness, grief brings other feelings which may come and go, change and change again, over a long period of time. There is often guilt, anger, bitterness or resentment; feelings of helplessness, loneliness, or the futility of living; great anxiety, fear and sometimes panic. There are almost always physical effects too. Not surprisingly, bereaved people often feel physically exhausted – yet they may be unable to rest or sleep. Many feel listless and without energy. Some find they become short of breath, suffer tightness in the throat or chest, or feel they are suffocating. There can be unexplained headaches or other aches and pains, stomach upsets or diarrhea. Some parents say that their arms ache for the baby they cannot hold.
Unfortunately, in many parts of the word today, child and infant mortality is still high: for example, figures for India in early 1992 were around 15 per cent for under-5s (Aiken, 2001). In the western world, parents are collectively fortunate in having overcome the ravages of childhood infectious diseases. In the late twentieth century, about 45 per cent of the deaths of older children in the US occur as a result of accidents, whereas leukaemia and other cancers account for about 18 per cent (Aiken, 2001). In studies conducted in the middle 1980s, Fish (1986) found high levels of grief present even some years after the death among a sample of parents who had lost an offspring (at ages from infancy to adulthood) 1 to 16 years before. In Fish’s study, as in many others, levels of grief were generally higher for mothers than for fathers, although fathers showed higher levels when the child had died beyond the age of infancy. This finding is consistent with the evolutionary prediction that in the early years mothers will show greater intensity of grief than fathers, as a consequence of their higher initial parental investment and greater parental certainty.
Death of a child is widely recognized as a severe and difficult form of loss. However, many deaths occur early in the child’s development, before the parents have been able to form a relationship based on the individuality of that child. Miscarriages occur in up to 15 per cent of pregnancies in the US and up to 20 per cent in the UK (Frost and Condon, 1996). There have been many reports of reactions such as guilt, depression and anxiety, which are consistent with grieving, occurring following miscarriage among women from the western world. There are several reservations about using reports of depression and anxiety following a miscarriage as evidence of grief. One is that simply noting their occurrence does not demonstrate whether there has been an increase in these measures from before to after the miscarriage. With the exception of some recent studies, most reports include neither measures taken before the miscarriage nor the use of control comparison groups. Even studies which do allow such comparisons contain two further confounds. First, it is known that the rate of miscarriage is increased by stressful circumstances (Lee and Slade, 1996), which are themselves likely to raise the levels of depression and anxiety. Second, the physical trauma of a miscarriage constitutes a further stressor contributing to such reactions (Lee and Slade, 1996). These considerations are difficult to control for when looking for evidence of grief.
Bearing in mind these reservations, some studies have used questionnaires which concern grief reactions. Grief intensity scores are usually high immediately after the miscarriage, but generally decline fairly soon afterwards (Janssen et al., 1997). Reactions to the loss may last for several months, and years in some cases. The nature and form of any grief reaction is likely to depend on the woman’s circumstances, for example whether the pregnancy was planned or not, the existence of recognition and support, uncertainties over future pregnancy prospects, and family pressures to have children. To the mother (and to a lesser extent the father), the inner experience may involve a person to whom an attachment begins to be felt right from the beginning of pregnancy, based on plans and hopes for the future. There may be grief for ‘the passing of a dream’, as one woman expressed it. This highlights the point made in general models of the generation of grief that it is the discrepancy between the outside world and the person’s inner experience, their cherished ideas and plans that evokes grief, rather than a loss defined in any objective terms.
Along with miscarriages, stillbirths are experienced by a large number of mothers each year. Even though stillbirth entails the loss of the anticipated future rather than of an established relationship, the general features of grief are still essentially those characteristic for marital bereavement. There is initial disbelief, preoccupation with thoughts of the deceased, guilt, despair, appetite and sleeping disorders, hallucinations, illusions of the presence of the deceased, anger and self-blame (especially if no discrete cause of death can be provided). The unexpectedness of the loss may make grief more intense. There is very little evidence of changes in grief over time after a stillbirth, or of the relative distress compared to control samples. One exception is the study by Boyle et al. (1996), whose study of grief following neonatal death included a sample of mothers who had lost a child through stillbirth. Compared to controls (mothers with a surviving infant), their relative risk for depression was 5.5 at 2 months after the loss, falling to 1.7 at 8 months, although there was a slight increase (to around 2.7) at 15 and 30 months. Anxiety showed a similar trend over time although the initial rate was relatively lower.
Several studies cover the general period of perinatal or neonatal death that is they include both stillbirths and deaths occurring in infancy (and some include miscarriages as well). Longitudinal studies of perinatal loss in Australia, the US and the Netherlands (Boyle et al., 1996; Hunfield et al., 1997) all show higher levels of distress and grief soon after the loss and a steady decline thereafter, with measures being taken at various times from 2 weeks to 4 years after the loss. In one study (Hunfield et al., 1997) distress was still apparent after 4 years in over a third of the women.
Sudden infant death syndrome (SIDS) occurs without warning and without a discernible medical condition. These features combine to make it particularly difficult to accept since they are generally associated with more distress. Boyle et al. (1996) found that the relative risks for depression and anxiety among mothers who had lost a baby through SIDS were substantially higher than those resulting from other forms of neonatal death or from stillbirth: for example, at 2 months afterwards, the RR for depression was 7.9 for SIDS compared with 4.3 for neonatal death; but 30 months after the loss, it was 6.8 for SIDS and 1.5 for neonatal death. These findings support the view that sudden infant death is generally a more traumatic experience than are other forms of infant losses.
There are several interconnected reasons why SIDS might be more difficult to accept and why there might be more intense grief than with other forms of infant death. First, there is no forewarning, which is a feature generally associated with greater difficulties in accepting the death and with more intense and prolonged grieving. Second, a SIDS death shares some of the features of traumatic deaths such as suicide, notably in that there is difficulty in providing an adequate account or explanation of the death. Third, because of the ambiguity over its cause, SIDS may be associated with negative social reactions directed towards the grieving parents. This is likely to be exacerbated by the involvement of the legal system-for example, the parents may be interrogated or even taken into custody by the police. Taken together, these features may lead to problems in constructing an account of the loss, and to intrusive thoughts which are difficult to reconcile with assumptions the bereaved person had about the world before the death occurred. Also, the circumstances of SIDS do not help the bereaved to discuss their feelings. A series of studies based on a longitudinal investigation of parents bereaved by SIDS has addressed these issues.
Downey et al. (1990) found that many parents were not concerned with constructing an account of the loss, and even that those who made attributions of blame to themselves or others were more distressed at any one time than those who did not make attributions of responsibility. They also found that the presence or absence of an account of the loss did not predict long-term adjustment. Any link between attributional processes and levels of distress measured at the same time was probably the result of both measures reflecting the overall strength of grief. Lepore et al. (1996) measured the perceived degree of constraint on talking about their loss in mothers whose infants had died from SIDS. Among those who experienced a high degree of constraint, the more intrusive thoughts they experienced shortly after the loss, the greater was their increase in depression at 3 months and 18 months. However, for those mothers who experienced few social constraints, more intrusive thoughts immediately after the loss were not associated with relative depression levels at 3 months after the loss. Indeed, there was even a negative relationship between earlier intrusive thoughts and relative levels of depression at 18 months: those with initially high levels of intrusive thoughts had relatively lower levels of depression 18 months later
There is little systematic evidence on the intensity and duration of grieving for a son or daughter lost at different ages. Nevertheless, putting together the findings at specific ages indicates a steady overall increase in the intensity of grief from early pregnancy loss through to loss of an adult. Evidence consistently supported the prediction that grief would be more pronounced for mothers than for fathers early in the child’s life, but thereafter as the child grew older this difference would diminish, although it did not altogether disappear.
The few studies which concerned losses among women who had no other children indicated stronger reactions to a miscarriage and to a greater extent to child deaths at later ages. Grief following an induced abortion or SIDS is complicated by the specific circumstances of these losses. Two studies indicated that SIDS was indeed more distressing both initially and in the longer term. It has often been stated that the unexplained nature of the loss produces particular difficulties for the bereaved parents. One carefully controlled study of attributions parents made for the death, and the impact of these attributions on the long-term outcome, indicated that there was no relationship between constructing a meaning for the loss and later adjustment as is widely assumed. A supportive social environment for mothers experiencing more intrusive thoughts after the death did seem to be more important. If this was present, later adjustment was better in these parents than among those with fewer intrusive thoughts. If it was absent, mothers with more intrusive thoughts showed poorer long-term adjustment than those with fewer intrusive thoughts.
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