psychological aspects of perinatal loss

Best Practice & Research Clinical Obstetrics and GynaecologyVol. 21, No. 2, pp. 249e259, 2007

doi:10.1016/j.bpobgyn.2006.11.004available online at http://www.sciencedirect.com

6

Psychological aspects of perinatal loss

William Badenhorst MBBCh, MRCPsych

Specialist Registrar

Patricia Hughes* MD, FRCPsych

Professor

Division of Mental Health Sciences, Jenner Wing, St George’s University of London, Cranmer Terrace,

London SW17 0RE, UK

After perinatal loss, parents experience painful grief. Fathers and mothers show the same pat-tern of symptoms, but generally mothers’ distress is more intense. Grief should be sympathet-ically acknowledged by health professionals, and parents should be reassured that their feelingsare normal and that recovery may take many months. Intense depression lasting more than 6months may require psychological treatment. There is some evidence that delaying conceptionfor a year may allow an easier pregnancy psychologically. The common practice of encouragingparents to have contact with a dead infant is not evidence-based and may have adverse effects,including inducing symptoms of post-traumatic stress disorder. A protocol of postnatal follow-up allows parents to get appropriate information about the loss, including possible problems andtiming of another pregnancy. The subsequent pregnancy is stressful, and health professionalsshould recognize that parents may suffer significant anxiety.

Key words: perinatal loss; stillbirth; neonatal death; psychological effects; psychosocialmanagement.

The recognition of perinatal loss as a significant bereavement is relatively new. Untilthe late 20th century stillbirth and neonatal death were as common in the Westernworld as they now are in the developing world, and where child death is not unex-pected, attitudes to the loss are also different. Parents now anticipate their pregnan-cies being successful and their children surviving to adult life, and are deeply shockedand distressed by the loss of an expected child.

* Corresponding author. Tel.: þ44 20 8725 5535; Fax: þ44 20 8725 5524.

E-mail address: [email protected] (P. Hughes).

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250 W. Badenhorst and P. Hughes

CULTURAL AND HISTORICAL BACKGROUND

Before the end of the 19th century, infant deaths in Europe in the first year of lifewere around 150e200 per thousand live births. About 40% of children died beforetheir 10th birthday, with children from poor families twice as likely to succumb asthose from more prosperous ones.1,2 Public health measures e including clean wa-ter and infection control e led to significant improvement by the early 20th cen-tury, although as late as 1910 two or three in every 10 live-born children died bythe age of 10 years.2 Registration of births and deaths was introduced in Englandand Wales in 1837, and registration of stillbirth in 1928. No reliable national dataare available prior to that date, but a recent study reviewed records from hospitalsin six cities in the UK, Europe and US and found that between 1880 and 1930,stillbirth accounted for 5e10% of births.3 However, during that period hospitalbirths were usually for women with problem deliveries, with most women givingbirth at home, so this may not reflect true national rates. By 1930, after the es-tablishment of the government-sponsored Committee on Maternal Mortality andMorbidity (1929), and when records were routinely available, there were 80 peri-natal deaths per 1000 UK births. With the introduction of safe blood transfusion inthe 1930s, and of sulphonamides and penicillin in the 1930s and 40s, mortality forboth mother and infant improved dramatically. By 1945 perinatal deaths had fallento 45, and by 1981 to 12 per 1000 births.4 Since that time there has been onlya marginal change.

Attitudes to child loss have changed in line with parental expectations and withprosperity. Children were valued in previous generations, but where poor familiesbarely subsisted, a birth was also another mouth to feed. Conditions for many peoplein the industrialising world of the 19th century were similar to those experienced inthe developing world today, with most income spent on food, long, hard hours ofwork, and precarious survival. This continued to be the case for much of the UK pop-ulation as late as the 1930s and 40s.

In previous centuries there is evidence that while attachment to grown childrenwas strong, parents might be less attached to young infants, whose survival was notassured. Michel de Montaigne, who was deeply affectionate towards his family, com-mented ‘. I lost two or three (children), whilst they were at nurse, if not withoutgrief, at least without repining.’5 A century later Simonds D’Ewes, on losing his onlyson at the age of 21 months, wrote ‘We both found the sorrow for the loss of thischild on whom we had bestowed much care and affection and whose delicate favourand bright grey eye was so deeply imprinted on our hearts, far to surpass our grief forthe decease of his 3 elder brothers, who dying almost as soon as they were born werenot so endeared to us as this was.’6 A similar attitude may prevail in present-day urbancommunities in the developing world, where infant mortality is extremely high, withparents protecting themselves from too intense an attachment to a child whosehold on life is uncertain.7

The earliest published paper in the medical literature relating to parental distressafter perinatal loss appeared in the 1950s. This was sympathetic to the mother’s dis-tress, and advised encouraging the mother to put the loss behind her and have anotherbaby.8 In another early paper, a physician comments with surprise that a woman hadtold him that she was as upset about her stillbirth as she had been by the loss ofher mother.9 The father’s feelings were not discussed: his role was to support hiswife and to help her recover.

Psychological aspects of perinatal loss 251

NOTES ON GRIEF AND MOURNING

Grief is the normal affective response of a person to a significant loss and includes sad-ness, irritability, disturbed sleep and appetite, a sense of longing for the lost person,and occasionally visual or auditory hallucinations of the deceased. An acute sense ofloss generally gives way to feelings of low mood or depression. Anger is commonand may be directed towards others, or towards the self, for real or imagined failureto protect the lost person. Mourning is the process of recovery, with gradual lesseningof distress and return to normal patterns of living.

It is important that doctors and other health professionals do not pathologize a nor-mal response to bereavement and treat it as though it were an illness. Bereavement ispart of life, and the vast majority of individuals recover with time, not without continu-ing sadness, but able to live happy and productive lives. The relevant issue for healthprofessionals is not whether a parent experiences feelings of grief, but whether thereare factors in the management of the loss that facilitate or hinder recovery, andwhether there are specific interventions that can be offered that will help parents.

The literature on abnormal or ‘pathological grief’ is a patchwork of idiosyncratic def-inition and opinion. The absence of an agreed definition of what constitutes normalmourning has been a major problem. A summary of clinical opinion is that pathologicalgrief differs from normal by its duration and/or the degree to which day-to-day behaviourand emotional state are affected.10 Although various subtypes have been suggested11,most descriptions fall into two broad categories, prolonged and absent grief. Grief issaid to be prolonged if there is no improvement by 6 months. By this time the loss shouldnot be centre stage in a person’s life, and though there will still be sadness, she might ex-pect to be more or less able to carry out normal family or work responsibilities.12 A mi-nority of parents show a low level of distress after loss, and perceive themselves as copingfairly well.13 Despite suggestion that suppression of feelings of grief predisposes to sub-sequent psychological problems14, empirical research shows that people who suppressgrief do not usually experience relapse or other symptoms, and many recover withrelatively few difficulties.15e18

PSYCHOLOGICAL EFFECTS OF PERINATAL DEATH ON MOTHERS

In the weeks following perinatal death, mothers experience sadness, irritability, guilt orsomatic symptoms.19,20 The high prevalence of feelings of depression and anxiety sug-gest that these are normal reactions. The severity of disabling symptoms diminishesover the first year21e23, but are normal for up to 1e2 years24, with about 20% ofwomen having symptoms at case level a year after the loss.25 More intense or pro-longed grief has been associated with poor level of social support21,22,26,27, historyof mental health problems22,27,28, and more ‘neurotic’ pre-loss personality.29 Con-versely, the construct of ‘hardiness’ as an individual resource has been posited tohelp bereaved parents adapt to perinatal loss.30 One study found a correlation be-tween guilt-proneness and shame-proneness and grief intensity31, although thedirection of causality could not be established. Studies on the association betweenchildlessness and level of distress found conflicting results.22,28,32,33 No associationhas been found with difficulty in conceiving21,28, greater maternal age32e34, sex ofthe baby13,35, socio-economic status22,28,32, or religious observance.21,22,28,32,36 In ad-dition to depressed feelings, 20% of mothers were found to have post-traumatic stressdisorder (PTSD) in the pregnancy subsequent to stillbirth, and symptoms were


enduring, although only 4% were at case level a year after the subsequent birth, and itwas posited that the pregnancy following perinatal loss may be an activating event forPTSD symptoms.37 The same study also noted that PTSD was associated with themother having held her dead baby.37 There is no evidence available regarding PTSDsymptoms following neonatal loss or about PTSD after stillbirth in a non-pregnantgroup. There is a slight increase in puerperal psychosis following perinatal death butit remains rare.38

PSYCHOLOGICAL EFFECTS OF PERINATAL DEATH ON FATHERS

Kennell et al19 included anecdotal evidence from fathers’responses in a study of mothers’grief reactions, including an interesting observation that two fathers ‘tensely denied’ hav-ing grieved for their lost infants. Although research on perinatally bereaved fathers is sim-ilar to work on mothers in its methodological quality and findings, there are someimportant differences. In addition to grief, qualitative studies emphasize fathering andsupportive roles, i.e., the experience of becoming a father and the perceived need to pro-vide emotional support to the mother.39e42 Most quantitative studies comparing fathersto mothers have found lower levels of grief13,43e46 and lower levels of anxiety and de-pression in fathers than in mothers47e50, but higher than in a control group.47 One studyfound initial guilt feelings in fathers41, but this was not confirmed in other studies.39,40

A study of fathers in the pregnancy following stillbirth found significant anxiety whichresolved with time, and case-level PTSD in 20%. As with mothers, these symptomswere associated with holding the dead infant, but symptom levels fell after the nextinfant’s birth.51 Vulnerability factors are similar to those in mothers.13,51

EFFECTS OF PERINATAL DEATH ON THE COUPLE RELATIONSHIP

Perinatal loss can strain the relationship between bereaved parents, especially if par-ents do not experience grief reactions in tandem.39 For instance, when one parentis no longer feeling sad, the other may experience this as unfeeling. Both fathersand mothers may describe higher levels of marital dissatisfaction than expected.52 Lon-gitudinal studies have identified an increase in relationship break-up.52,53 There is an-ecdotal evidence that couples may make significant life changes such as moving houseas a consequence of the trauma of perinatal loss.54

EFFECTS OF PERINATAL DEATH ON SIBLINGS

Experiences of siblings vary, and are influenced by age-related cognitive ability, antici-pation of the new baby’s arrival, and the way in which the family responds to the loss.Children may pick up cues and know more than parents expect. Young children mayimagine that they or their parents were to blame, and this may be especially relevant ifthe child himself had mixed feelings about the arrival of a new sibling. Children’s re-sponses can be difficult for parents to deal with, as they may appear nonchalant ormay ask questions that the grieving parents find painful.55e58 Older children may suffera severe sense of loss59, and parents may be so preoccupied with their own grief thattheir children’s needs are overlooked.60


EFFECT OF PERINATAL LOSS ON THE NEXT BORN

The mother’s ability to form a close emotional relationship with subsequent children isalso important. Several clinical authors have described the hazards of the ‘replacement’child, who may be idealized or denigrated by the parents56, and the ‘vulnerable child’whose parents constantly anticipate another loss and deal with the child with exagger-ated anxiety.61

On the basis of clinical experience, some authors have advised delaying the subse-quent pregnancy for a year to allow the mother time to mourn the lost child.10,14

More recent quantitative evidence shows that symptoms of depression and anxietyare higher in those who conceive quickly, and that unless there is another compellingreason for an early pregnancy, then waiting a year to conception is probably in themother’s best interest.62

Two studies have found an increase in disorganization of infantemother attachmentin the next born63,64, and one of these specifically linked this to the mother havingseen the dead infant.64

CULTURAL DIFFERENCES

Most research has been conducted in North America, Western Europe and Australia,with some studies deliberately excluding parents from ethnic minority groups andothers having an under-representation of parents from ethnic minorities in their sam-ples. None of these has specifically looked at cultural differences between northernEuropean white parents (in UK, US or Australia) and those from ethnic minoritygroups. A qualitative study on low-income African American parents emphasizedthe added burden of other losses and socio-economic hardship, as well as the useof spirituality in coming to terms with the loss.65 One small study explored experi-ences of middle-class Indian women after perinatal loss and found both substantialgrieving and sometimes family blame for not producing a healthy child.66 A study ofTaiwanese women67 also emphasizes the importance of a cultural ‘ideology ofcontinuity’, with women being expected to produce a child for the family.

INITIAL PSYCHOSOCIAL MANAGEMENT OF PERINATAL DEATH:GENERAL PRACTICE POINTS

When it becomes apparent that things are going wrong, parents should be told in clear lan-guagewhat is happening andwhat themedical management is. Parents value receiving struc-tured information as well as support in helping them make sense of the event.68 At a timewhen parents are highly aroused and fearful, clinicians shouldnote that parentsmay struggleto take in information and that it may need to be repeated. Information given to parentsshould also be communicated to other team members to avoid conflicting information.

In a descriptive study on the care of critically ill neonates, Benfield and colleagues34

addressed the effects of parents’ involvement in decision-making, such as withdrawingventilation when the prognosis for survival appeared hopeless. Parents who partici-pated in such a decision did not show significant differences in overall intensity of griefsymptoms, but showed significantly less anger, irritability and wanting to be left alone(mothers) and sleep disturbance, loss of appetite, irritability, crying and depression(fathers). Leon69 emphasizes the benefit of giving parents a role in decision-makingfor their dying infants with regard to their experience of helplessness.


Recent protocols70,71 either explicitly or implicitly endorse interventions aimed atforming memories, such as seeing or holding the dead baby, giving a name, taking pho-tographs and holding a funeral. The clinician should bear in mind that these protocolswere developed on the basis of clinical impression and without empirical evidence thatthey were beneficial. There is now evidence that physical contact with the dead infantmay be associated with poorer psychological outcome, particularly with regard to de-pression and post-traumatic stress disorder symptoms and to infantemother attach-ment in the next born.72 However, many parents experience these practices asmeaningful and treasure the memory of their time with the dead infant, and somewould choose to have contact regardless of potentially harmful outcomes. Decision-making in this regard raises interesting ethical considerations, with a potential conflictbetween the principles of autonomy and beneficence. The principle of patient auton-omy is paramount, as in any medical decision-making, but arguably weakened by thereduced capacity of a parent to make decisions at a time when they are intenselyshocked and distressed. Inevitably, in many cases the decision is likely to be heavilyinfluenced by the attending staff. Staff previously invoked the principle of beneficenceto justify removing the baby to protect parents from further distress, and now mayinvoke it to justify exposing even reluctant parents to the baby.73

MEDICAL NEEDS AFTER PERINATAL DEATH

Mothers who suffer perinatal death may not have the same access to routine care wherethey can discuss their physical needs in the postnatal period. Close liaison between hos-pital and community services is important. Relevant issues of care include suppression oflactation, contraception, gynaecological complications and sexual difficulties.74

Parents appreciate the opportunity to meet the consultant responsible for the birtha month or two later to discuss possible reasons for their infant’s death, to review theautopsy report, and to raise questions about their own well-being and possible furtherpregnancies, although they are often disappointed when an autopsy does not explainthe death.54

SPECIFIC INTERVENTIONS

Counselling is offered routinely and is often found useful by those who seek it, al-though a recent Cochrane review has not found randomized controlled trials to dem-onstrate its value.75 Support groups are provided by voluntary organizations and arehighly valued by their members. Some centres use specialist grief support teams, whichintegrate immediate psychosocial management, ongoing support, counselling and spe-cialist referrals for treatment of pathological grief reactions.21,76 Such an approach hasthe benefit of providing continuity of care, but the resources may not be available inmost hospitals. Bourne and Lewis77 argue for units to have a staff forum where everyperinatal death is discussed, so that information and awareness are increased and thewelfare of the treating doctors and nurses can be promoted.

REFERRING TO PSYCHIATRIC SERVICES

While parents may be reassured that most people need time to grieve and that symp-toms for 1e2 years may be normal, a referral for psychiatric assessment is indicated ifdepressive symptoms are associated with suicidal ideas or if the depressive symptoms


continue at a level of severity beyond 6 months that prevents the parent taking upnormal life again. Psychiatric management may include antidepressant medication if in-dicated, judicious short-term use of hypnotic medication to alleviate sleep disturbance,and psychological treatments.

Psychological treatments may be useful in addressing some of the continuing emo-tional difficulties experienced by parents, such as helplessness, rage at losing a cher-ished part of oneself, and guilt due to the inability to prevent the death.69

Although both antidepressant medication and psychotherapy have been reported asuseful in treating ongoing depression, they have not been systematically evaluated forspecific use in perinatal bereavement.

SUMMARY

During the mourning of a perinatal loss, parents may experience sadness, guilt, anx-iety and depressive symptoms. Fathers show a lower intensity of symptoms thanmothers. The mourning process can take between 1 and 2 years. Occasionally itcan be complicated by prolonged symptoms which may require psychological treat-ment. Psychiatric disorders such as severe depression, post-traumatic stress disorderand, very rarely, psychosis may develop in some parents and indicate a referral forpsychiatric care. Longer-term sequelae of perinatal bereavement in the family mayinclude parental discord and separation, possibly related to PTSD, as well as psycho-logical problems in siblings. Immediate psychosocial management of perinatal deathincludes giving clear information and providing sympathetic support. Guidelines com-monly in use at present advocate seeing and holding the dead baby, naming it, andobtaining mementos to help the parents mourn the loss. Such practices are valuedby many parents and are culturally entrenched, but research shows that physicalcontact with the dead infant may be associated with poorer psychological outcome,in particular the development of post-traumatic stress symptoms in both parents andan increased likelihood of disorganization of infantemother attachment in the next-born child.

Continuing care may include postmortem discussions, attention to medical needsof mothers, and the use of support groups for those who find them helpful. For par-ents who struggle to recover or who develop psychiatric disorders, specialist care maybe indicated. Although risk factors such as previous psychiatric disorder and poor so-cial support have been identified, more research is needed in order to identify themost vulnerable parents. For those displaying psychological morbidity, counselling, psy-chotherapy and antidepressant medication may be of benefit, but empirical trials areyet to be conducted.

Practice points

� perinatal death represents a significant bereavement; it is normal for bothmothers and fathers to experience intense distress� parents should expect that by 6 months after the loss, they will have recovered

enough to resume normal activities and be beginning to enjoy life again, al-though they should not be surprised if they continue to feel significant distressfor 2 or even more years after the loss


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� parents value information on what is happening when problems arise in preg-nancy or during labour, and appreciate being involved in decisions on care ofcritically ill neonates� the current practice of encouraging contact with the dead baby to facilitate

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