Prenatal diagnosis of fetal abnormality:psychological e�ects on womenin low-risk pregnancies

Helen Statham* BSc

Senior Research AssociateCentre for Family Research, University of Cambridge, Cambridge, CB2 3RF, UK

Wendy Solomou MA

Research AssociateCentre for Family Research, University of Cambridge, Cambridge, CB2 3RF, UK

Lyn Chitty PhD, MRCOG

Consultant and Senior LecturerFetal Medicine Unit, Obstetric Hospital, University College London Hospital, London, UKDepartment of Clinical and Molecular Genetics, Institute of Child Health, University College London, London, UK

When given an adverse prenatal diagnosis, parents are deeply shocked and experience acutegrief. This review considers the psychological outcomes for parents whether they opt toterminate the pregnancy or continue, either through choice or because termination is not anoption. It covers the full spectrum of malformation from treatable, through those carryinga risk of signi®cant handicap, to lethal. It draws on two types of studies: those that areretrospective and qualitative, describing feelings and aspects of care, and those that areprospective and assess psychological state with standardized measures of grief, anxiety anddepression. The relationship between psychological outcome and possible associated variables,such as individual characteristics, nature of the abnormality and obstetric factors is describedand evaluated. In addition, the authors draw on both scienti®c and support group literature tosummarize good practice for the care of parents receiving an unexpected diagnosis of fetalabnormality.

Key words: termination for abnormality; prenatal diagnosis; psychological e�ects; decisionmaking; perinatal loss.

INTRODUCTION

In reviewing the literature on the psychological e�ects that a prenatal diagnosis of fetalabnormality might have on a pregnant woman it becomes clear that it is necessary toconsider the full range of both abnormalities and possible outcomes. The abnormality

1521±6934/00/040731+17 $35.00/00 *c 2000 Harcourt Publishers Ltd.

BaillieÁ re's Clinical Obstetrics and GynaecologyVol. 14, No. 4, pp. 731±747, 2000DOI: 10.1053/beog.2000.0108, available online at http://www.idealibrary.com on

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*Author to whom all correspondence should be addressed.

may be lethal but most are not, although they may carry a signi®cant risk of handicap.Some parents decide to terminate the pregnancy whereas others continue, eitherthrough choice or because termination is not an option. In some cases treatment,usually postnatal but occasionally in utero, may be available. Treatment may beassociated with varying degrees of success and, with or without treatment, there is arisk that surviving infants may be left with varying degrees of mental and/or physicalimpairment through childhood into adult life. It can be di�cult to predict theoutcome associated with a particular abnormality, be it a major, or minor and possiblytransient `abnormality'.1 Each of these outcomes impacts di�erently on the parentsin the longer term and it is likely that the immediate psychological e�ects will alsodi�er.

A study of the psychological e�ects of such diagnoses is di�cult. It is a sensitive andemotive area, further complicated by the di�erent populations (in terms of ethnicity,religious and moral beliefs and prior risk) in whom problems arise. It is a truism that itis always distressing for parents to be told that there is something wrong with theirunborn baby. Many studies of the responses to prenatal diagnosis have described thatdistress, but few have measured it in any formal way with a view to answering speci®cquestions with a clinical relevance. It has been well documented that the loss of thenormal and healthy baby that parents experience after any diagnosis is rightlyaccompanied by a grief response.2,3 Descriptions of this early grief are helpful inensuring that professionals and parents recognize the absolute normality of theresponse. Health professionals can also learn from these accounts to adapt practice tomeet the preferred needs of individual parents. The questions that arise subsequentlyconcern di�erential responses to di�erent situations. Thus there is a need to:

. Distinguish acute grief that is normal, from those reactions that are (more) patho-logical.

. Distinguish which obstetric, personal and social situations aremore likely to result inadverse psychological e�ects.

. Determine interventions that might help reduce adverse e�ects in vulnerableindividuals.

Two types of studies inform our understanding of these questions: those that aremainly retrospective and qualitative, describing feelings and aspects of care, and thosethat are prospective and that have assessed psychological state more quantitativelywith standardized measures of grief, anxiety and depression. Most studies relate towomen's experiences of second trimester prenatal diagnosis of abnormalities followedby termination. A much smaller number have considered the situation of womencontinuing with their pregnancies. Many of the studies and accounts we haveconsidered have concluded with recommendations for good care based on descriptionsof `what parents wanted'. There is almost universal consensus as to what constitutesgood practice at the time of any perinatal bereavement. Much of this arose after therecognition of stillbirth as a bereavement4±6 and is endorsed in literature produced bysupport groups for parents undergoing prenatal diagnosis.7,8 Throughout this chapter,we have summarized what is now recognized as good practice. A controlledinvestigation of whether practices that re¯ect these recommendations of parents arebene®cial is impossible, for those practices have been widely implemented. As Zeanah9

commented `Excluding parents from involvement with their dead or dying infantwould probably be as rare and problematic now as including them in the processmight have been 25 years ago'. In addition, there is an increasing trend towardsconsidering parents' satisfaction with care separately from whether or not it is

732 H. Statham et al.

associated with clinically improved outcomes. These recommendations are informedby ongoing analysis of data collected during our current study{.

RECEIVING A PRENATAL DIAGNOSIS

Initial response to diagnosis

Once a diagnosis has been made, common to all outcomes is deep shock at the initialloss of the normal pregnancy (for reviews, see Statham3, Green et al10 and Marteauand Mans®eld11). Many studies report observations made by women who terminatedtheir pregnancy following the diagnosis of abnormality. In these it is di�cult todistinguish the e�ects of the diagnosis from those that may be attributed totermination of pregnancy. However, studies have shown a high frequency of earlyemotional reactions including anger, despair, inadequacy, sleeping and eating disordersin the time shortly following diagnosis12, symptoms compatible with most acute griefreactions. Marteau and Mans®eld11 have suggested that individual characteristicsassociated with responses to a positive result following a prenatal screening test ± suchas having prior information about the possible outcome, individual coping style andsocial support ± are important in understanding the response to diagnosis. Thesevariables may mediate anxiety, but there is no evidence as yet that they are signi®cantin mediating the shock and distress when an abnormality is con®rmed. Researchdirected at establishing the degree of shock in a situation recognized as so distressing isof most value in the context of the options available, prevailing cultural attitudes andaspects that might relate to longer term adaptation by the parents.

The response to diagnosis will be tempered by the options available to the parents,including postnatal treatment or termination of pregnancy. The availability of treat-ment varies for many conditions particularly when dependent on a high level ofexpertise and sophisticated technology. Thus in 1997, O'Kelly and Bove13 comparedthe most likely management of babies born following the diagnosis of hypoplastic leftheart in Britain and the USA. At that time surgery was more widespread in the USAthan in the UK where terminal supportive care was the more probable `treatment'.Technology has spread such that surgery may now be discussed as an option by fetalcardiologists in the UK.

Termination of pregnancy is legal in many countries but not in others (e.g. Eire andNorthern Ireland) and at limited gestations in some (e.g. USA, Australia, Holland).

Response to diagnosis

Acute grief is normalParents in shock are often unable to take in informationRefer rapidly for con®rmation and/or further informationGive parents the opportunity to ask questions and time to consider options

{Detection of fetal abnormality at di�erent gestations: impact on parents and service implications is an ongoingstudy co-ordinated by the University of Cambridge and funded by the NHS (R&D) Mother and Child HealthInitiative. The study is investigating the experiences, feelings and emotional well-being of parents who havean abnormality detected during pregnancy or after birth. Parents are followed for 14 months after thediagnosis.

Psychological e�ects of a positive diagnosis 733

Where late termination is legal14,15 availability varies with practitioners' ethicalperspectives16,17 and their knowledge and interpretation of the law especially withregard to the severity of a malformation.18 Third trimester termination became legalin the UK in 1990, but even 2 years later, 36% of British obstetricians in Green'sstudy18 would not discuss termination of pregnancy for anencephaly after 24 weeks.Di�culties in obtaining termination because an individual obstetrician is unwilling in aparticular circumstance may in¯uence parents' feelings about the diagnosis they aregiven. Of course the di�culties for individual obstetricians confronted with the`desperate problem of a serious fetal abnormality diagnosed for the ®rst time in thethird trimester'19 and of midwives supporting parents during late diagnoses20 shouldnot be underestimated.

When parents have no choice but to continue the pregnancy, the question that mustbe asked concerns how they evaluate foreknowledge. Presumptions are made thatthere is the opportunity for emotional preparation21, but there is no empiricalevidence as to whether this is psychologically helpful for women in general, althoughwe will discuss below speci®c situations.

Attitudes to prenatal diagnosis and termination vary with di�erent cultures. Insome, for example Cyprus and Italy, local attitudes have always presumed terminationfollowing a diagnosis of thalassaemia.22,23 It is possible that such attitudes may a�ectresponse to diagnosis of abnormality in general. Cultural attitudes changewith time: inthe UK, termination for abnormality was always the most acceptable reason forabortion in the public view24 but recent surveys have shown that public attitudes arebecoming less favourable towards abortion on these grounds.25 There has been anincreased awareness of the rights of disabled people, many of whom are urgingopposition to `social and cultural pressures for selective termination of disabledpeople'.26 There is a growing scepticism of many things associated with the `newgenetics', seen increasingly as eugenic.27 Increased resources aimed at `geneticization'28

are contrasted with greater health improvements that could be achieved for a lower®nancial cost by social and political change. We do not know how these broad, societalaspects impact on individuals.

Speci®c aspects of particular diagnoses may have an e�ect on women's psychologicalresponse. In some cases it may take time to arrive at the ®nal prenatal diagnosis.Invasive testing for karyotyping following the diagnosis of an abnormality onultrasound may be necessary. Sometimes referral to a specialist fetal medicine unitfor con®rmation or clari®cation of a diagnosis made in a local unit is needed. Whilstthis time may be useful for parents to come to terms with the diagnosis and to allowfor recovery from the initial shock of the diagnosis, it is also a time of great stress whenparents may need support.29,30 In considering how parents might be in¯uenced in thelonger term, studies in related ®elds by Paton et al31 have suggested that satisfactionwith the way information is given is related to grief scores 8 weeks after women hadmiscarried. Cunningham et al32 have queried whether dissatisfaction with how adiagnosis of Down Syndrome was given is inevitable, given the implications of such adiagnosis and the tendency to `shoot the messenger'. They identi®ed aspects of theway in which the diagnosis was delivered that were related to satisfaction: how theywere told, access to information soon afterwards and the promise of domiciliarysupport. Furthermore, satis®ed parents were more positive. There are as yet no dataconcerning how parents' prior attitudes impact on their response to prenatal diagnosisnor how that initial response a�ects subsequent emotions and behaviours.

734 H. Statham et al.

Making decisions

When parents are told of a fetal abnormality they must make decisions, the mostimportant being whether to continue or to terminate the pregnancy. The studies thathave investigated predictive factors for the decision to terminate have beensummarized.11,33 There is considerable variation in results between studies, forexample Verp et al34 found higher termination rates after earlier diagnosis althoughDrugan et al35 and Pryde et al36 found no relationship between gestation at diagnosisand the decision. A recent analysis of demographic and pregnancy factors that might beassociated with termination for Down Syndrome37 found that gestational age was theonly independent predictor of the decision to terminate. The authors discuss these®ndings in the context of attachment to the pregnancy whereby women are moreattached and therefore less likely to terminate later in the pregnancy. An alternativepossibility, which our own work suggests, is that women who seek out earlierdiagnosis, with its increased risk of miscarriage, have thought more about terminationand even made a tentative decision to terminate prior to embarking upon testing. Thenature of the abnormality and its visibility on ultrasound are associated with thedecision to terminate.35 A recent review38 con®rmed the striking relationship betweenseverity and termination rates demonstrating that 92% of women terminated forDown Syndrome, where cognitive impairment is perceived as serious, but only 58%for Klinefelter syndrome, where physical and cognitive impairments are `relativelyminor'. These termination rates for Klinefelter syndrome (36±92% in eight studies) arehigh compared with ®ndings for a more recent German study.39 Only four out of23 cases (17%) were terminated, and termination rates for other sex chromosomeaneuploidies were also very low (12.7% overall), and this may re¯ect how parents werecounselled. Much attention has been paid to the ®nding by Holmes-Seidel et al40 thattermination rates were higher when parents were counselled by an obstetrician ratherthan a geneticist. However, this may re¯ect self-selection on the part of parentsseeking further advice and information after the initial diagnosis, although Marteauet al41 have found that obstetricians report themselves as counselling more directivelythan genetic counsellors.

When the diagnosis of an abnormality does not result in termination, even wherethis is legal and available, this is often because the condition is treatable, there will beno mental impairment and, with successful treatment, the baby will live.42 Afterdeciding against termination of pregnancy, or in the absence of a choice43, subsequentdecisions for parents continuing a pregnancy relate to aspects of the delivery, forexample the time, place and method, and subsequent treatment for the baby in theshort and long term.

While we know what decisions parents make in given situations, we know littleabout how they make them.44 It is possible that the psychological impact may vary with

Information and communication

Ensure e�cient systems of communication between local and specialist unitsAll health professionals should be informed about, and sensitive to, bothparents' situation

Information needs to be accessible, consistent and up-to-dateWritten information is very helpful

Psychological e�ects of a positive diagnosis 735

how the decision is made, parents' satisfaction with their decision-making, as well aswith the decision made. Although the process of decision-making about undergoingscreening and diagnostic tests in pregnancy has been studied45,46, decision-making aftera con®rmed diagnosis has been neglected.

Health professionals strive to be non-directional, although whether any informationcan be value-free47,48 or whether the goal of non-directiveness can be achieved has beenquestioned.49 Dimavicius50 has suggested that attempts to be non-directive cansometimes result in parents feeling abandoned and unsupported in their decision-making. Others have suggested that women are pressurised into termination.51

Preliminary analysis of data from our current study suggests many factors impinge onthe decision-making process: pressure from health professionals, from family and fromwithin the parents themselves, and pressure exerted towards termination or towardscontinuing a pregnancy.52 We have argued that to suggest that health professionalscompel parents to terminate a�ected pregnancies undermines the integrity of thoseparents as they confront very di�cult decisions: further detailed analysis of our data isongoing.

PSYCHOLOGICAL EFFECTS OF TERMINATION

With the recognition of stillbirth as a bereavement, a number of health professionalsreported similar grief responses from parents who had undergone a termination afterthe diagnosis of a fetal abnormality (for reviews, see Statham2,3; Marteau andMans®eld11). These and many other reports describe in great and informative detailthe deep emotions experienced by women undergoing a termination of a wantedpregnancy: sadness, anger, guilt, as described for grief associated with any otherbereavement but often thought to be complicated by the parents' role in decision-making. Many of the di�culties described by parents were associated with aspects ofcare, for example not knowing that termination would be through induced labour, notseeing or having any memories of the baby, not being warned of lactation. Standards ofcare have largely changed now, but however good the care, health professionals cannottake away the fact that parents are still bereaved:

`. . . I don't blame myself . . . wouldn't have done anything di�erently, given the circumstances . . .it's just that I get so angry because like I've got a load of pictures like I keep saying to you, a littlebox up there with ashes in, and a couple of photographs, for a lot of pain, for what? For a deadbaby. I haven't got nothing at the end of it. I haven't got a baby, have I? And I went through all thepain and stress' (Hu2237 in current study).

Throughout prenatal diagnosis, decision-making and afterwards

Sensitive care respects the choices parents have madeTime and honesty are essentialGive care separately from other pregnant women and babies, where appropriateInvolve and include women's partnersPsychological support should be available and systems in place to identify parentsneeding support

736 H. Statham et al.

The conclusions of those studies that have sought to quantify women's psychologicalresponse following termination are:

. Psychological distress is high in the immediate aftermath of termination12,{,53±56 withsome 40% of study participants showing symptoms of psychiatric morbidity.55

. Psychological distress falls over time formostwomen (maximum follow-up of 4 years)but some women remain distressed and, even for those coping well, aspects of theloss remain troublesome.12,53,55±59

. The nature and course of women's distress following termination is similar to thatfollowing spontaneous perinatal loss.54±56 Lilford et al60 have suggested that womenwho had undergone a termination of pregnancy were less well-adjusted compared towomen who had experienced a spontaneous perinatal loss of a baby withabnormalities (measured 16±20 months later) but di�erences were very small andon only one of a number of measures.

From the large body of literature on parents' responses to (spontaneous) perinatalloss at di�erent gestations (for reviews, see Zeanah9; Hunfeld58) predictors of moreadverse psychological responses have been identi®ed although there is considerableinconsistency in the ®ndings of di�erent studies. Obstetric, demographic and socialfactors have been indicated. Caution is needed in the interpretation of the ®ndings ofempirical studies of women following termination that have de®ned predictors ofadverse psychological e�ects. Perinatal grief is a complex emotion and cannot beadequately described by analysis of data from small, possibly unrepresentative, samples,which do not allow for the separation of spontaneous loss from an elective, albeitundesired, termination.

Obstetric factors

The principal obstetric factor that has been investigated is gestational age. Develop-ments in prenatal diagnosis have tended towards earlier diagnosis. Assumptions havebeen made that termination at early gestations will be psychologically easier since itwill be performed under general anaesthetic, an undoubtedly easier procedure for thewoman's physical well-being. There is, however, little evidence that terminating apregnancy at earlier gestations results in improved emotional well-being for themother in either the short or long term.

Black53 reported modest associations between mood disturbance and gestation, asmeasured using the Pro®le of Mood States61 6 months after termination or miscarriage,but she suggested that the large variation across gestations would not enable gestationto be used as a predictor. Iles62 commented that `psychiatric morbidity was higher forterminations carried out later in the second trimester' but these data are not publishedfrom her study which measured psychiatric state 1, 6 and 13 months post-termination.Neither Zeanah et al54 nor Salveson et al56 found any relationship between gestationalage and depression or perinatal grief. Zeanah et al assessed depression63 and PerinatalGrief 64 2months post-termination,while Salveson et al56 conducted a longitudinal study

{All of the women in the studies reported by Hunfeld12,58 were diagnosed after 24 weeks when terminationwas illegal in Holland. They have been included with terminations here because 38 of the 46 women in thestudy were induced. Four babies were dead at induction and ®ve were still alive at 3 months althoughseverely handicapped. The study is detailed, longitudinal and contains much interesting and thought-provoking data but interpretation of the ®ndings in the context of continuing or terminating a pregnancy isdi�cult. This perhaps reinforces our point that for lethal and serious malformations it is the diagnosis that issigni®cant for parents.

Psychological e�ects of a positive diagnosis 737

measuring depression65 and the `Impact of Event'66 within a few days, 7 weeks, 5 monthsand 1 year after termination.Only scores on themeasure of intrusion immediately post-termination (Impact of Event)were correlatedwith gestation. Preliminaryanalysis of datafrom our own ongoing study, which fortunately does allow for multivariate analysis,suggests that gestational age is not a predictor of grief in the immediate aftermath oftermination.67,68 Although a number of studies of spontaneous loss have found clearrelationships between gestation and grief69,70, it would appear that this is not necessarilythe case for elective terminations following a diagnosis of fetal abnormality. Samplesizes, participation rates and the lackof knowledge concerning the emotionalwell-beingofmotherswho have declined to participatemustmake us cautious in the integration ofthese ®ndings into clinical practice. In the sameway that there has been the assumptionthat early is easy, these ®ndings could lead to equally invalid assumptions that late is notdi�cult. We would urge sensitive and individualized care of all mothers undergoingtermination at whatever gestation.

Few other obstetric factors have been investigated: neither Black53 nor Zeanah etal54 found di�erences between women terminating for lethal or non-lethal malforma-tions, although Iles62 commented on a di�erence but presented no data. Zeanah et al54

found no variation with method of termination but other studies have notsystematically compared the psychological e�ect of surgical versus medical methods.Shulman et al71 state that `dilatation and evacuation is a preferable method for mid-trimester termination of pregnancy' but give no data to support this statement.

Demographic factors

Black53 found no e�ect of maternal age, socio-economic class, religion or previouspregnancy experiences on post-termination mood although Zeanah et al54 reported anegative relationship between age and grief scores. White-van Mourik et al57 and Ronaet al59 have also suggested that younger women are more vulnerable.

Social factors

The factors that seem most consistently associated with post-termination mooddisturbance are social, but even here there is not agreement. Most study participantsreport good support from partner and other close friends and relations.53,57 Poorsupport from the woman's partner53,62,67,68 or family and friends53 are associated withincreased morbidity. Other stressful life events54 and previous history of psychiatricdisorder62 are also implicated. Although Black53 found no association between previousmental health and current mood six months post-termination, women with lownegative mood in the immediate aftermath of the termination were more likely tohave already sought help with regard to their mental health.

Aspects of care

Management of parents undergoing termination has changed. We have suggestedpreviously that termination for abnormality was seen as a way of solving a problem2,3

and care at that time re¯ected the assumption that it was doing parents a favour.There is now increased awareness of parents' feelings around perinatal loss when thepregnancy is terminated and data from our ongoing study show that 80% of womenscore their satisfaction with care in hospital as 4 or 5 (on a 0±5 scale where 5 is`completely satis®ed'). However, as we have discussed previously, it is di�cult to

738 H. Statham et al.

examine whether procedures, now routine, are indeed helpful. It is widely believedthat seeing the baby after termination is an aid to mourning so the ®nding by Hunfeldet al12 that women who saw their baby had higher grief scores is surprising. A study ofwomen who had had a stillborn child in Sweden in 199172 did reveal signi®cantlyincreased anxiety-related symptoms both for women who had not seen the child for aslong as they wished, and for women who reported no token of remembrance of theirchild. When a pregnancy has been terminated because of a structural malformation, itis particularly important that issues regarding seeing or not seeing the baby arediscussed within the context of parents' possible fantasies about their child being amonster or the abnormality not really being present.73 The most important messagethat arises from many of the studies is that the individual nature of parents' responsesis recognized and choices given74 that `neither bias parents or make presumptions thatwould limit parental choices'.

After a termination

Many of the early anecdotal accounts of women's experiences focused on the lack ofany professional aftercare following a termination (e.g. Kenyon et al75). Today thereappears to be considerable variation in aftercare available to parents. In the UK, somewomen receive clinical and emotional support from hospitals, midwives and GeneralPractitioners whereas others receive no follow-up care at all. Parent-support groupsseem to be very important for the women who choose to use them. There is noevidence that formally organized counselling is helpful to parents, nor that it is not.What might bene®t those who seek counselling because of the individual need may beinappropriate for others. Individuals who participated in a randomized trial ofcounselling after the diagnosis of testicular cancer were psychologically moredistressed76 than those declining participation. Lilford et al60 found no di�erencesbetween women who had been randomized to receive counselling following perinatalbereavement compared with those who had not. Grief scores were better after 16±20months for those who had engaged fully with the counselling compared with thosewho had only attended 2 or 3 sessions but di�erences were small. It is of coursepossible that where a need for formal counselling is recognized, supportive care mayalready be routine and the bene®ts of extra counselling may not be apparent.77

Termination of pregnancy

Prior to and on admission parents need information about:Method and place of terminationPain reliefSeeing the baby and mementosPost mortem and disposal of the body

Prior to discharge women need information about:Lactation and physical symptomsWho to contact if they experience problems

Warn parents of the normal emotional responses to bereavement

Psychological e�ects of a positive diagnosis 739

Where an `abnormal' grief response has been identi®ed55 this has not been related tointerventions/follow-up. Suslak et al78 commented that `little formalised research isavailable with respect to psychological reactions that couples have to terminating anabnormal pregnancy or therapeutic interventions that might be useful in managing thegrieving process'. Participation in research can be a supportive intervention. Womenrecruited to a study of grief immediately after miscarriage were signi®cantly lessdepressed at 2weeks and 6months thanwomen recruited at those times.79 Many of theparents participating in our current study have commented on the supportive nature oftheir involvement in the research. Controlling for this support is essential ininterpreting the ®ndings of studies.

In the longer term, there are issues to be faced regarding subsequent pregnancies.There is no evidence concerning the right time to wait. Lewis80 believes that grief andmourning cannot be completed during a pregnancy such that embarking on a newpregnancy before resolution of the previous bereavement is dangerous for themother's future mental health. However, older women might feel ill-able to a�ord towait. Although numbers were small, 76% of 24 women in the study by Salveson et al56

who had terminated a pregnancy had tried to become pregnant again within a yearcompared with only 30% of those who had experienced a spontaneous perinatal loss.A recent paper81 suggested that a shorter time between a stillbirth and another preg-nancy was associated with depression in mothers, but the signi®cance of the ®ndingsvaries with the cut-o� times chosen, making interpretation of the data di�cult.

Although women with any pregnancy failure are anxious about a subsequentpregnancy82 it is possible that becoming pregnant when there is a known reason for thefailure of the previous pregnancy is less stressful than following an unexplained loss.Recent preliminary data from Nikcevic et al83 suggest that mood 4 months after amiscarriage is higher in women with an explanation for the miscarriage (e.g. chromo-somal or immunological) than in those where no reason could be given. It is unclear,however, if these women were aware that they may be considered at increased risk inany subsequent pregnancy as highlighted by Chitty and Pandya84 and would facedecisions about increased invasive testing. The nature of women's responses to beingseen as `at-risk' but having a reason for a fetal loss will be very individual. For somewomen, the reason for the termination will lead to them knowing that they are at highrisk in future pregnancies and the impact may be more severe.

Psychological e�ects on partners

There is little formal research that documents the experiences of men whose baby isfound to have fetal abnormality. Mothers have been asked about their partners'feelings85 but beyond an account by a father86 little is known of their own feelingsabout termination. Hall draws attention to his need to support his partner; from hiscontacts with other men he describes a common problem they experience ofappearing una�ected and uncaring. Where men's experience of perinatal loss has beenstudied, e.g. after miscarriage, men were found to be strongly a�ected by themiscarriage as evidenced by levels of grief and stress.87

PSYCHOLOGICAL EFFECTS OF CONTINUING A PREGNANCYAFTER PRENATAL DIAGNOSIS

There are few published data that consider the psychological impact of continuing apregnancy with a prenatally diagnosed abnormality although when the abnormality is

740 H. Statham et al.

treatable there is literature concerned with the long-term outcome for the infants.Parents can ®nd themselves with an ongoing pregnancy complicated by fetal abnorm-ality, either because they choose to, or because they have no option (for examplefollowing a late diagnosis).

Continuing a pregnancy following the diagnosis of a lethal malformation

There is a small number of published accounts in the scienti®c literature describingpregnancies after women had made the choice to continue with a pregnancy when thebaby had a lethal malformation. Watkins88 has described one woman as `moreemotionally intact 3 months later than the majority of women I have seen who haveundergone a later termination on genetic grounds'; Green et al10 pointed out that allwomen in this situation do not necessarily get the level of care that may havecontributed to her emotional state. This ®nding was clearly reinforced by Chitty et al89

who detailed the course of ®ve pregnancies after lethal malformations were diagnosed.Although all ®ve mothers in this study valued the time to prepare for the birth anddeath of their child, many had distressing experiences during the pregnancy. Four ofthem would choose early prenatal diagnosis in a subsequent pregnancy, three becausethey valued the forewarning and the fourth because she would terminate an a�ectedsingleton pregnancy. Recommendations concerning communication, continuity of care,personalized care and appropriate training for health professionals are given in Chittyet al.89

There are reasons to hypothesize that women who elect to continue a pregnancy toterm may experience a better psychological outcome than women who terminate:such women are thought to be spared the guilt associated with decision-making andhave more time to prepare for the death of their baby. Care may be better for womenlater in pregnancy; for example in the UK aftercare is statutorily provided by midwivesafter a delivery later in gestation. There is, however, no evidence that shows di�erentoutcomes since no-one has attempted such a study. Answering this question requiresthat we consider: the personality and social characteristics of women who ®ndthemselves making this choice (indeed whether they have a choice or whethergestation at diagnosis precluded termination43); whether guilt is a feature of bereave-ment per se or to do with producing a child with a severe abnormality or associatedwith the decision to terminate; and whether care, if di�erent and more supportive,really does impact in the longer term.

Continuing a pregnancy following the diagnosis of a treatable anomaly

When parents choose to continue with a pregnancy after the diagnosis of a non-lethalmalformation, they cannot of course be given certainty that treatment will besuccessful. Two studies, one retrospective90 and one prospective91, conclude that theshort-term e�ect of a prenatal diagnosis of a treatable anomaly is an increase in anxietylevels in both women and their partners. In addition, increased anxiety is exacerbatedby waiting for con®rmatory scans and access to full information about themalformation and postnatal management. Women who received an antenatal diagnosisof uropathy90, retrospectively reported high levels of short-term anxiety irrespectiveof the gestational age at which news of the fetal abnormality was given. Time betweenrepeat scans was seen as a period of great stress. When no prognosis was o�eredparents tended to assume the most pessimistic outcome and 30% of the sample feltthat reassurance during the antenatal period was unsatisfactory. It is di�cult however

Psychological e�ects of a positive diagnosis 741

to predict outcomes accurately following the prenatal diagnosis of many, includingrenal, abnormalities.1 Giving reassurance is subsequently very di�cult but recognitionof parental anxiety and emotional support may be helpful in such situations. Persistentanxiety was not reported by these mothers of investigated and treated infants at amean age of 25 months.

Anxiety levels, using the State-Trait Anxiety Inventory92 were higher in mothersimmediately following a con®rmed ultrasound diagnosis of surgical anomaly in com-parison to a group of women receiving a normal outcome from the ultrasound scan.91

However, after a paediatric surgical consultation, women's state anxiety levels,measured at home a week later, fell to control levels in most cases. This apparentresolution of anxiety to levels seen in normal pregnancies is surprising, particularlygiven the quoted mortality risks for some malformations, e.g. 50% for diaphragmatichernia. Although the authors commented that anxiety levels might have fallen withoutthe consultation, parents emphasized the importance of the surgical input in allayinganxiety, brought on in part, according to the majority of parents, by the lack of speci®cinformation or even misinformation given by ultrasonographers or obstetricians inreferring hospitals. Many parents were concerned with issues such as infant feeding andtravel to regional centres as well as with the technical details of surgical treatment.

Although there are data concerning the rate of continuing pregnancies after adiagnosis ofDownSyndrome38 there are scant and anecdotal data concerning the impacton the mother during the pregnancy or in relation to adaptation to having a child withDownSyndrome.Awomanwriting inArmstrong93 described knowing as `dreadful' andby the end of pregnancy thought it had been a mistake to know. In particular, sheresented being admired for her decision, and the presumptions that her child would behappy. Knowing they had done the right thing for them did not make living with thatdecision easy. Adoption following the diagnosis of Down Syndrome at birth is not rarebut we are unaware of data concerning the psychological response of parents whochoose to continue a pregnancy with a view to giving the baby for adoption.

While it is important to allow single accounts and anecdotal experiences to raiseissues, and prompt reconsideration of practice, we must not generalize. ThusWatkins88 has been cited often as evidence that continuing is a good thing. It may befor some women in some situations, just as some women who choose terminationmight choose di�erently if their social situation di�ered.28 But many women would bedistressed at the thought of enduring many weeks of a pregnancy they see as doomed.

Whether prenatal diagnosis is advantageous compared with a postnatal diagnosis forthose women who would not terminate is beyond the scope of this review. People are

Continuing a pregnancy

Parents may experience ambivalent feelings

Prepare parents for:How, where and when their baby will be deliveredWhat their baby will look likeWhat will happen to their baby after delivery

Communication and team-work are essential

Understand practical di�culties ± travel, childcare, expense

742 H. Statham et al.

equipped to rationalize their experiences as the best that could have happened. Theremay be an impact on the child following a prenatal diagnosis: physical outcomes maybe di�erent and that will have an impact on what the parents have to deal withpostnatally. The psychological advantages and disadvantages for parents followingtransfer of care to a specialist centre for the birth of their baby is unknown.Where theanomaly is not physical, the foreknowledge of even slight mental impairment mayresult in them treating the child di�erently.94

CONCLUSIONS

Prenatal screening and diagnosis are now part of routine antenatal care even thoughthe tests o�ered change constantly. Recognizing the grief and sadness that women feelafter prenatal diagnosis is important, but beyond describing it, there is much that wedo not know. We have few clues that enable us to identify those women mostvulnerable to particularly adverse responses. There are insu�cient data concerning theimplications for women who continue pregnancies with a con®rmed malformation tosay whether or not foreknowledge is psychologically advantageous. The longer terme�ects for women left with and without babies have not been considered. There is apaucity of information concerning the responses of partners to the diagnosis of anabnormality in their baby.

A few women are at increased risk when they become pregnant, either because of afamily history or because of some maternal condition such as diabetes or epilepsy. Interms of absolute numbers they contribute relatively little as the majority of fetalabnormalities occur in women at low prior risk. Although the psychological burdenthese women may bear could be considerable, especially as they are at risk in everypregnancy, we are unaware of studies that have considered the psychological e�ects ofa con®rmed diagnosis in high-risk women.

There are as yet no known psychological advantages for women who terminateearlier compared with later. Earlier diagnosis is likely to increase, with many womenwilling to pay for it. Professional enthusiasm for early testing is not universal and manyfeel that further study, of the psychological as well as the usual clinical and economiccosts and bene®ts, should be undertaken before widespread implementation intoclinical practice. It is likely that the bene®ts of changing technologies will bepredominantly for those women who are told that nothing abnormal is detected.There is no reason to believe as yet that any changes in diagnostic technology willimpact on the emotional response of those parents told of a fetal abnormality who facethe di�cult decisions we have discussed about the future of the pregnancy.

We know nothing about the impact of other changes in clinical procedures. Anti-progesterones are increasingly used to begin the induction process, altering theexperience of induced labour with less time in hospital, but more time beforeadmission. Feticide before induction at later gestations may be especially distressing forparents witnessing the precise moment of death of their baby or may be comfortingfor parents wishing to know when their baby stops su�ering. Advances in treatmentoptions for babies born with particular anomalies create further dilemmas for parentsbalancing their desire for a child with a possible risk of additional su�ering for thatchild.

We hope we have demonstrated that health professionals need to be aware of thegreat variability in potential responses from parents following the initial shock of aprenatal diagnosis. They must discuss choices equally regardless of the parents' age,

Psychological e�ects of a positive diagnosis 743

social class, ethnicity and beliefs and then support them in their decisions. However,exactly what form delivery of information and support should take remains largelyunclear from the research literature.

In the introduction to this chapter we suggested that three questions needed to beanswered. Data are available to describe acute grief, which is the normal response toprenatal diagnosis regardless of the outcome of the pregnancy, and methods areavailable to identify parents who react more adversely. Further study is required if weare to be able to de®ne the obstetric, personal and social situations that might result inmore adverse psychological e�ects and to determine interventions that might betherapeutic.

Acknowledgements

Helen Statham andWendy Solomou are supported by the NHS R&D (Mother and Child HealthInitiative).

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