C H A P T E R 2 6

1. C H A P T E R 2 6 Bereavement and loss in maternity care

2. The chapter aim s to: • consider the meaning of bereavement and loss in maternity and childbearing • Demonstrate the significance of bereavement and loss in maternity and childbearing • discuss forms of loss • draw on research evidence and other knowledge to review the care of those affected by loss.

3. Introduction • bereavement is linked with loss through death. • the original meaning of ‘bereavement’ is implies يدل على plundering, نهبrobbingكشط, snatching خطف or otherwise removing traumatically and, crucially, without consent. • This meaning may conflict with the other part of the title – ‘loss’ –. • But any inconsistencyتضارب is fallacious وهمى because, although bereavement involves ‘taking’ in various ways, the unspoken hopes and expectations invested in that which is lost remain irretrievable.صعب إصلاحه

4. loss in childbearing is unique, due to the awful contrast إختلاف فظيع between the sorrow of death and the mysticaباطنى l joy of a new life. • the ‘juxtaposition’تجاور of birth and death aggravates responses • any childbearing loss is unique, the uniqueness of both the individual's experience and the phenomenon itself must be contrasted with the frequency with which ‘lesser’ childbearing losses happen. • lesser losses include the reduction of the parents' independence, the woman's loss of her special relationship with her fetus at birth, or the family loss of the expected idealized baby when they recognize that the actual baby is all too real • the woman losing a baby and her care by the midwife.

5. Grief and loss • Grief, like death • All human face grief in some form, possibly when young. • a woman in a higher income country experiencing childbearing loss may be too young to have previouslyيواجه encountered the grief of death.

6. Attachment • Limited understanding of mother–baby attachment, or ‘bonding’, long prevented our recognition of the significance of perinatal loss. • The relationship develops with feeling movement and experiencing pregnancy, including investigations such as ultrasound scans., attachment continues to develop beyond the birth • Attachment during pregnancy means that, should the relationship not continue, it must be ended as with any parting. • the reality of the mother–baby relationship needs to be recognized before the loss can be accepted. • These processes are crucial for the initiation of healthy grieving.

7. Grief • Through grieving we adjust to more serious, and lesser, losses throughout life. • Healthy grief ; • move forward, not directly, from the initial distraught مضطرب hopelessness. • We achieve some degree ofالقرار resolution, or perhaps integration, which permits ordinary functioning much of the time. • Through grief we learn something about both ourselves and our resources • Grief as passivity, but it is really a time when the bereaved person actively struggles النضال with the emotional tasks facing her • the term ‘grief work’ summarizes this struggle • individual variations cause the person to move back and forth between them before reaching a degree of resolution.

8. Box 26.1 • Stages of grief • Shock and denial • Increasing awareness • Emotions: sorrow – guilt – anger • Searching • Bargaining • Realization • Depression • Apathyلا مبالاة • Bodily changes • Resolution • Equanimity رباطة الجأش • Anniversary reactions.ردود فعل الذكرى

9. The initial response to loss a defense mechanism protecting the individual from impact of the news or realization. • shock or denial, which insulatesيعزل the bereaved person from the unbearablyلا يطاق unthinkable reality. حقيقة لا يمكن تصورها • Facilitating coping with realization, this allows some ‘breathing space’, during which the person marshalsحراس their emotional resources. • Denial soon becomes ineffective and awareness of the reality of loss dawns. • Awareness brings powerful emotional reactions, together with physical manifestations. • Sorrowful feelings emerge but, less acceptably, other emotions overwhelm the bereaved person. • These include guilt and dissatisfaction, as well as compulsive searching and, disconcertinglyمقلق , anger. • Realization dawns in waves as the bereaved person tries coping strategies to ‘bargain’ with herself to delay accepting the grimمتجهم reality.

10. When such fruitlessغير مثمر strategies are exhausted, the despair of full realization materializesيتحقق , bringing apathy and poor concentration, together with bodily changes. • At this point, the bereaved person may show anxiety and physical symptoms, like depression. • When the loss is eventually accepted, it starts to become integrated into the person's life

11. this is not straightforward and may involve slow progress and many setbacksالنكسة , with oscillation ذبذبة and hesitationتردد . • the person may never ‘get over’ the loss, it should eventually be integrated. • This ultimate degree of ‘resolution’ is recognizable in the bereaved person's contemplationتأمل with equanimity رباطة الجأش of the strengths, and weaknesses, of the lost person and relationship

12. Significance • Healthy grieving matters ,it contributes to balance or homeostasis in the bereaved person's life. • Grief helps people deal with the wounds inflictedيلحق by the greater and lesser losses of life. • The hazards of being unable to grieve healthily have long been recognized in emotional terms, but there may be an association between perinatal loss and physical illness • This research suggested the woman's need for support regardless of the nature of the loss or the extent to which it is recognized, or her grief sanctionedيقرها , by society.

13. Culture • A general picture of healthy grieving, individual variation are common to people of different ethnic backgrounds, • The manifestations of grief, and accompanying mourning الحداد rituals, vary hugely. • These variations are influenced by many factors. • the massive differences between ethnic groups in attitudes towards childbearing loss. • A midwife may understanding the different attitudes to loss in cultures • culture, and influencing mourning, are the grieving person's religious beliefs, These are difficult to separate from social class and societal attitudes.

14. mourning has a universal underlying purpose. It establishes support for those closely affected, by strengthening links between the people who remain. • In perinatal loss the midwife initially provides this support. • The midwife's role is to be with the woman when she begins to realize the extent of her loss and to prevent interference in the woman's healthy initiation of grieving.

15. Forms of loss • The terms ‘loss’ and ‘bereavement’ apply to a range of experiences, varying hugely in severity and effects • We must be careful, however, to avoid assumptions about the meaning of loss to a particular person. • It is difficult, even impossible, for anybody to understand the significance of a pregnancy or a baby to someone else. • This is because childbearing carries a vast range of profound feelings, including unspoken hopes and expectations based on personal and cultural values. • We should accept that grief in childbearing, like pain, is what the person who is going through it says it is

16. Some situations of childbearing grief are not included here, while some situations listed here may not engender يولد grief. • Perinatal loss • When loss in childbearing is mentioned, loss in the perinatal period comes quickly to mind, which includes the stillborn baby and the baby dying in the first week. • Attempts have been made to compare the severity of grief of loss at different stages, perhaps to demonstrate that certain women deserve يستحق more sympathy. • Study showed no significant differences in the grief response between mothers losing a baby by miscarriage, stillbirth or neonatal death

17. Stillbirth • mother's long-term recovery from stillbirth. Study :compared the recovery of 380 women who had given birth to a stillborn baby with 379 women who birthed a healthy child. • These researchers found that the mother recovered befer if she could decide how long to keep her baby with her after the birth and if she could keep birth mementoesتذكار .

18. The mother whose recovery was more difficult was the one where the birth of the baby was delayed after realization of fetal demiseزوال . • the researchers discuss the ‘known’ stillbirth, when the mother knows before labour that her baby has died, previously termed ‘intrauterine death’ or ‘IUD’. Alternatively, the loss is unexpected. • the mother aware of carrying a dead baby bears particular emotional burdens. • These burdens, compounded by the baby's changing appearance, may impedeيعيق her grieving.

19. Early neonatal death Grieving a live born baby who dies may be facilitated by three factors. First, the mother has seen and held her real live baby;giving her genuine صادق memories. Second :the registration of both the birth and death of a baby dying neonatally, providing written evidence of the baby's life. Third, staff investment in the care of this dying baby increases the likelihood of effective parental support Even for the mother whose preterm baby survives

20. Accidental loss in early pregnancy: miscarriage • Early pregnancy loss may be due to various pathological processes, such as ectopic pregnancy or spontaneous abortion. • The term ‘miscarriage’ is preferable, to include all accidental losses. The grief of miscarriage has long been ignored, because of its frequency. • Research shows: • @ miscarriage to be far from an insignificant event • @some mothers so ill that they fear for their lives. @reassurance in the conception of the pregnancy lost, @some come to doubt their fertility.

21. the mother finds difficulty in locating support and encounters comments denigratingالإساءة her loss • It may be necessary to seek the cause of a woman's miscarriage, especially if it happens repeatedly • Although miscarriage has been linked with stressful life events, found no link between psychosocial stress and miscarriage. • Limited recognition of miscarriage ,nature of a religious service, of photographs or of communicating sorrow through writing a poem or letter.

22. Infertility • Grief associated with involuntary infertility is less focused than when grieving for a particular person • the couple grieve for the hopes and expectations integral to the conception of a baby. • Realization of their infertility, and the associated grief, is aggravated by the widespread assumption that conception is easy • Complex investigations and prolonged infertility treatment result in a ‘roller-coaster’ السفينة الدوارة of hope and despair.

23. the couple in an infertile relationship grieve differently from each other, engenderingالمراعاة tensions. • the diagnosis or cause of their infertility resolves some uncertainty, but raises other difficulties. These include one partner being ‘labelled’ infertile and, hence, ‘blamed’ for the couple's difficulty. • A complex spiral of blame and recriminationالإتهام المضاد may escalateيزود to damage an already vulnerable relationship • counselling an infertile couple differs markedly from counselling those bereaved through death.

24. Relinquishmentالتنازل for adoption • relinquishment is followed by grief • relinquishment is voluntary, grief is unlikely. • Mother relinquishment was definitely involuntary and she had no alternative to relinquishment • These mothers really were ‘bereaved’ in the original sense • The grief of relinquishment differs from grief following death. • First, after relinquishment grief is delayed,because of the woman's lifestyle and partly because of the secrecy السرية

25. Secondly, the grief of relinquishment is not resolved in the short or medium term, because acceptance of loss is crucial to resolving grief. After relinquishment, such acceptance is impossible due to the likelihood that the one who was relinquished will make contact when legally able.

26. Termination of pregnancy (TOP) • Grief associated with termination of an uncomplicated pregnancy is problematic and for this reason it tends not to be included in the literature on grief. • The experience of grief following TOP for fetal abnormality and of guilt following TOP do, • the frequency of TOP and the grief engendered, this deservesيستحق more attention.

27. TOP for fetal abnormality (TFA) • The package of investigations known as ‘prenatal diagnosis’ may lead to the decision to undergo TFA. • avoiding giving birth to a baby with a disability • Why mother face conflict griev after TFA; • the pregnancy was probably wanted • the TFA is a serious event in both physiological and social terms • the reason for TFA may arouse guilty feelings • the recurrence risk may constitute a future threat • the woman's biological clock is ticking away • her failure to achieve a ‘normal’ outcome may engender guilt.

28. Interventions involve counseling and the creation of memories • psychotherapeutic counselling • mothers attending for counselling would probably have resolved their grief more satisfactorily than other .

29. TOP for other reasons • associated with the acrimonious abortion debate that continues in some countries. • the grief and depression, presenting as tearfulness, were thought normal after termination of pregnancy • these reactions could be prevented by counselling before, as well as after, the TOP.

30. The baby with a disability • For various reasons a baby may be born with a disability, which may or may not be anticipated. Disabilities vary hugely in severity and their implications for the baby. • The mother may have to adjust to the possibility of her baby dying, but many conditions permit the continuation of a healthy life. • The mother's reaction to a baby with a disability will involve some grief,Especially the condition was unexpected, as the mother must grieve for her expected baby before relating to her real baby.

31. The mother may be shocked to find herself thinking that her baby might be Although the mother may be reassured that such thoughts are not unique, she may still find it difficult to begin her grieving. • If a baby is born with an unexpected disability, the problem of breaking the news emerges. ,clear, effective and honest communication is crucial

32. The midwife's experience • The emotional reaction experienced by the midwife may come as a surprise to her. • Considering herself to be a professional person, she may be taken aback by the strength and complexity of her feelings when caring for a bereaved mother.

33. Box 26.2That sad day • This is a summary of feelings and thoughts when I discovered an intrauterine death at 41 weeks' gestation. The woman involved had been admitted for induction of labour and neither of us was prepared for this. • My heart sank when on initial palpation her abdomen felt cold and then the electronic fetal monitor did not detect the heart beat (I had just used the machine earlier). I knew, although it would be difficult, that I had to try and prepare her. I stayed later to try and give some continuity of care and support for her and her husband. After the scan confirmed the death I hugged her and her husband and cried with them. After this happened,

34. I had a day off work with a severe migraine caused by stress. • I felt very nervous and sick about going back to work, this was compounded when I discovered that the woman had been admitted to Intensive Care and was very ill. However, I did go back to work, visited the woman and sat holding her hand. We talked about her sadness and she said she had been worried about me leaving work late and wondered how I had coped getting home and facing my two children. I couldn't believe that she was concerned about me! She remembered every word I had said to her and praised my honesty. I had told her before the scan that I was sure that the baby had not survived. Two weeks later I attended the funeral جنازة in order to seek closure and to demonstrate my sympathy and sadness for the parents.

35. I have been a midwife for over 12 years and this has NEVER happened to me before. The whole event was very traumatic and upsetting for me. Some colleagues told me not to be upset, cry and/or get involved, but this was ineffective advice. I was so determined that my experience should not be inتافه vain that I wrote this reflective piece. In total I have experienced the loss of over nine friends and relatives including my parents when I was fairly young. However, nothing can prepare someone (even a professional) for discovering that a baby has died and having to prepare the parents for this. Without the love and support of my family, friends and colleagues I would not have coped. As healthcare professionals we should be empathic and display understanding towards our colleagues in similar situations.

36. I will encourage midwives to be honest with the clients. This will ensure that words are carefully chosen and also sensitively put, because they will be clearly remembered in years to come. I will not try to smooth over colleagues' feelings when they are involved in issues like this. • look at guidance for other midwives in situations like this.

37. Loss in healthy childbearing • It may be hard to understand that, even in uncomplicated, healthy childbearing, grief may still present as a feature.

38. The ‘inside baby’ • The woman's grief may be because, despite obstetric technology, the mother is unable to view her baby before birth. • the real baby differs from the one whom she came to love during pregnancy. • These differences may be minor, such as the amount of hair or crying behavior. • the term ‘inside baby’ the one whom she came to love during pregnancy and who was perfect.

39. The ‘outside baby’ is the real one, for whom she will care and who may have some imperfections, such as the wrong colour of hair. • the mother may have moments of الندمregret, during which she grieves the loss of her fantasy ‘inside’ baby, before being able to begin her relationship with her real baby.

40. The mother's birth experience • loss of her anticipated birth experience. If she hoped for an uncomplicated birth, even some of the more common interventions may leave her feeling like a failure

41. Care • the care that midwives provide in the event of loss, there are difficulties in deciding where to begin. Thus, I have organized this section by focusing first on those who are involved or affected and then on other issues • . the principles of midwifery care. While recognizing the artificiality of distinguishing care for the individuals involved in this complex situation

42. The baby • It is particularly hard to separate the care of the baby from the care of those who are grieving • Midwives may think of the care of the baby before the birth • the cot's presence may cause the staff some discomfort, it reminds everybody of the baby's reality. • the midwife discusses with the parents prior to the birth their contact with the baby.

43. This contact takes any of a number of forms, beginning with just a sight of the مغطى wrapped baby. • Contact with the baby has been said to resolve some of the confusion surrounding the birth;