psychological aspects of prenatal diagnosis and its implications in multiple pregnancies

PRENATAL DIAGNOSISPrenat Diagn 2005; 25: 827–834.Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pd.1270

REVIEW

Psychological aspects of prenatal diagnosis and itsimplications in multiple pregnancies

Elizabeth Bryan*The Multiple Births Foundation, Queen Charlotte’s and Chelsea Hospital, Du Cane Road, London, UK

Couples expecting twins are often unrealistically optimistic and are therefore unprepared for the complicationsas well as the practical and emotional impact the birth of twins can have on the family. All such coupleswill need information and support throughout the pregnancy and beyond. In this review, the various aspectsthat should be addressed are discussed, in particular, health care workers and counsellors need to be aware ofthe stress experienced by parents who have been through prolonged treatment for infertility or who face thespecial problems associated with the loss of one twin (implies the loss could be other than death). Copyright 2005 John Wiley & Sons, Ltd.

KEY WORDS: twins; higher-order births; multiple pregnancy; prenatal screening; selective; multifetal pregnancyreduction; perinatal bereavement

INTRODUCTION

Few couples that conceive twins or triplets will haveany prior knowledge of what is entailed in the care andupbringing of multiple birth children. For many women,the pregnancy itself may be unexpected, let alone amultiple one. The chances of conceiving twins increasewith parity and maternal age (MacGillivray et al., 1988).An increasing number of mothers of multiple birthsare relatively old (Kiely and Kiely, 2001) and mayfind the pregnancy as well as the demands of caringfor two or more babies at once especially stressful.Although couples receiving treatment for infertility maywell believe they would be fortunate if they had twoor even three at once—an instant family, many will beinexperienced first-timers. In addition to these problems,and of particular relevance to the prenatal diagnostician,there is an increased risk of a variety of complicationsin multiple pregnancies. These can pose unique andcomplicated issues for both the parents and healthprofessionals.

Couples who are expecting twins, triplets or higher-order births need specific information and support tohelp them through the pregnancy and prepare for caringfor more than one baby. Yet, all too often they are givenlittle or no information specific to a multiple pregnancy(Spillman, 1992, 1999). A large number of people maybe involved in the prenatal care of a family expecting amultiple birth, both at the hospital and in the community.One of the main problems experienced by parents is alack of liaison between these carers.

In this article, an attempt will be made to highlightsome of the issues that need to be addressed during

*Correspondence to: Elizabeth Bryan, The Multiple Births Foun-dation, Queen Charlotte’s and Chelsea Hospital, Du Cane Road,London W12 0HS, UK. E-mail: [email protected]

pregnancy. Unfortunately, there is as yet little objectiveresearch on the subject. Much of what is written hereis based on over 30 years experience of working withmultiple birth families through the Twins and MultipleBirths Association (Tamba) and the Multiple BirthsFoundation (MBF).

ROUTINE COUNSELLING

The diagnosis

A diagnosis of a multiple pregnancy is always a surprise,often a shock, and may sometimes cause considerabledistress (Campbell et al., 2004; Spillman, 1985). Parentsshould be told of a multiple pregnancy with sensitivityand without any tacit, let alone spoken assumption asto what the expectant mother’s—or father’s—reactionis likely to be. It is helpful if the father can bepresent and the couple should be given an immediateopportunity to discuss the news with a doctor or midwifewho can answer the various initial questions about theimplications of a multiple pregnancy that most concernthese particular parents.

If a multiple pregnancy is diagnosed early in thepregnancy, as is often the case when it follows infertilitytreatment, the parents should be warned that one (ormore in the case of higher-order pregnancies) of thebabies may not survive because of the ‘vanishing twin’syndrome (Landy et al., 1986; Pharoah et al., 2001).Owing to this risk, some obstetricians do not tell theparents of a twin pregnancy until after the first trimester.Many parents, however, say they would prefer to be toldstraight away. Indeed, many consider they have a rightto be told, not least because of the increased risk indizygotic (DZ) pregnancies, of conceiving twins again(MacGillivray et al., 1988).

Copyright 2005 John Wiley & Sons, Ltd.

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Prenatal screening

Prenatal screening in a multiple pregnancy presents spe-cial problems and couples are often inadequately coun-selled about these. Practices and protocols for screen-ing in multiple pregnancies still vary between individ-ual practitioners and in different parts of the UnitedKingdom (Multiple Births Foundation, 2004). Moreinformation specific to multiple pregnancy is neededboth for the parents and for the healthcare profession-als as well as national guidelines. Furthermore, prena-tal counselling on prenatal screening should be adaptedwhen it is for couples with a twin pregnancy that fol-lows assisted conception. These couples usually havea greater knowledge of the tests available and havea higher uptake of nuchal translucency screening, buta low rate of invasive testing such as amniocentesis(Holmes and Jauniaux, 2004). Before embarking on anyform of prenatal screening or diagnostic test, a couplepresenting with a twin pregnancy will need to under-stand how the situation differs from that of a singletonpregnancy in relation to age risk, procedural difficultiesand options for action in cases of fetal anomaly (Meyerset al., 1997), as well as in its implications for zygosityand chorionicity. Details of screening tests available inmultiple pregnancies are covered elsewhere in this jour-nal (see Wald and Rish, and Maymon et al., this issue).

Before embarking on screening in multiple pregnan-cies, parents need to consider carefully what action theywill take should one or both of the fetuses prove to havesome form of anomaly. If both babies are found to benormal, the parents can feel reassured. If both are abnor-mal, the situation is tragic, but a decision to terminatethe pregnancy is probably no more complicated thanwith a single child. Indeed, the decision may be easierbecause the burden of two children with very specialneeds would be greater. In these circumstances, mostcouples that have chosen testing will usually decide tohave the whole pregnancy terminated.

If one baby is normal and the other is not, the dilemmacan be extremely painful. Many couples who would nothesitate to have a pregnancy terminated for a singleabnormal fetus find it difficult to do so when another,normal, fetus will be lost. In the past, the choice laybetween terminating the whole pregnancy or continuing,knowing that one baby would be handicapped andrequire special care while the parents were also tryingto respond to the healthy child’s needs. Now, there isa third option of selective feticide, although this bringsits own dilemmas and pain for the parents (Bryan, 2003and see Rustico et al., this issue).

Zygosity

Although obstetricians appreciate the importance ofdetermining the chorionicity in a multiple pregnancy(see Smith et al., this issue), fewer appear to be con-cerned with the accurate determination of zygosity.Indeed, there are many obstetricians, even now, whomislead parents by telling them that their twins are def-initely DZ because they have a dichorionic placenta

(Ooki et al., 2004), despite the fact that about one-thirdof monozygotic (MZ) twins also have dichorionic pla-centae. There are clear medical and scientific reasonsfor determining zygosity (Bryan et al., 1997). Of equalimportance is the parents’ own frequent wish to know(Bryan et al., 1997; Bamforth and Machin, 2004). Bam-forth and Machin (2004) studied the reasons why parentshad requested zygosity determination from their labora-tory and placed them into five categories: ‘need to know’(for their own or children’s sake); ‘curiosity’ (differ-ing opinions amongst family and friends, always beingasked); ‘health reasons’ (discordant growth or illness,genetic conditions); ‘misinformation’ (dichorionic twinsthat had been labelled DZ) and ‘familial twinning’ (toestimate chances of having twins again).

In the MBF’s experience, some parents are discon-certed when the results of zygosity testing are not asthey had expected. This can occur when they have mis-takenly assumed that, because they can easily tell theirchildren apart, they cannot be MZ. A few have neededthe opportunity to discuss their feelings of confusion atsome length. A small minority of parents prefer not toknow the zygosity of their children. They say the infor-mation will not affect the way they care for or bring uptheir children and therefore do not wish their childrento be ‘labelled’. Clearly, their wishes must be respected,although, in certain circumstances, such as discordancyin disease or in physical or mental development, theymay be asked to reconsider their decision later.

Preparation for parenting

Parents expecting multiples need specific informationand advice in addition to that provided in normalparentcraft classes. In particular, they need to learn aboutfeeding two babies at once, equipment and practical care.They also need to know about the emotional challengesof relating to more than one baby at once and thehandling of possibly adverse reactions to the arrival oftwins in any older children. Special parentcraft classesrun by a nursing professional, ideally with the help of avolunteer parent of twins to offer practical informationand advice, should be started early.

Few expectant parents appreciate the practical impli-cations of looking after two or more babies at once.Parents should be encouraged to consider in good timewhat help could become available. Help will be needednot only with the practical tasks but also to allow themother to give periods of the one-to-one attention andstimulation that any single-born baby receives. Adviceon appropriate help as well as equipment can best belearnt from other parents of multiples. All maternityunits should maintain close contact with the local Par-ents of Twins Club, which will, for example, be able toprovide a member to discuss and possibly demonstratebreastfeeding twins (Leonard, 2003).

Family implications

Mother–infant relationship

The complexity of relating to two or more babies at thesame time often causes considerable emotional strain.

Copyright 2005 John Wiley & Sons, Ltd. Prenat Diagn 2005; 25: 827–834.

PSYCHOLOGICAL ASPECTS OF PRENATAL DIAGNOSIS 829

This is especially so if one of them has had to remainlonger in hospital, is ill, or, as often happens, is justless responsive. Some mothers may also initially findit difficult to tell their babies apart and feel ashamedabout it. Many fathers continue to have difficulties indistinguishing their babies. Not unusually, mothers feel apreference for one baby especially if they are of differentsizes or temperament (Minde et al., 1990; Spillman1984, 1999). The guilt that this provokes often preventsthem from acknowledging this difficulty and thereforereceiving the help and reassurance they need.

The long-term effects of early mother–twin relation-ships have yet to be established. A study of pretermsingle-born and twins found that mothers of twinsshowed fewer initiatives towards their babies and wereless responsive to both positive signals and to cry-ing. They also lifted, held, touched and patted theirbabies less and talked to them less. When tested at18 months, the cognitive development of the twins wasless advanced than that of the single-born controls andmaternal behaviour in the newborn period was predictiveof the level of development of the children at 18 months(Ostfeld et al., 2000).

One twin may well be ready to go home beforethe other, but most units now try to keep both babiestogether in hospital and discharge them together. Other-wise, the mother’s relationship with the baby left behindmay suffer. Hay and O’Brien (1987) showed that theeffect of later discharge may have lasting effects on selfesteem as shown by withdrawal, depression and mal-adjustment. In school-age twins, later discharge fromhospital was shown to be the most important of threefactors, the others being birth order and birthweight.

Father

A notable feature of the mothers of twins who cope wellduring the first years is a good and secure relationshipwith their partner (Hay et al., 1990). Inevitably, afather of twins needs to be more heavily involvedwith the babies’ care than would be the father of asingleton. The earlier he is helped to recognise this need,and is positively encouraged to participate, the better.Inevitably, he may find the first year, in particular, asevere strain as he tries to balance the emotional andpractical needs of the family with the frequent need toprovide extra income for his unexpectedly large family.Many fathers have questions and worries (e.g. abouttheir own role, capabilities, costs, help needed), whichthey may be reluctant to discuss in front of their partners.Special sessions for fathers at the prenatal meetingscan be valuable especially if fathers of older twins areprepared to come and share their own experiences.

Siblings

An older sibling often feels suddenly neglected andisolated by the arrival of twins, especially where he orshe has previously been the prime focus of attention.Problems can be compounded by thoughtless friends aswell as strangers giving undue attention to the twins

and, in effect, ignoring the older sibling. Behaviourproblems in older siblings of twins are much morecommon than those seen with singletons (Hay et al.,1987a). It is therefore essential that careful thought isgiven to preparing the child.

Parents may need advice on when and what to tellolder children about the pregnancy. The risk of thevanishing twin syndrome may deter discussion until thebeginning of the second trimester.

In case the mother has to enter prolonged hospitalisa-tion, siblings may need to develop in advance a confidentrelationship with an adult other than their father whowill be responsible for their care during the mother’sabsence. This adult may well continue to be importantto this child.

Development of twins

The development of most multiple birth children will bewithin the normal range. For both medical and environ-mental reasons, however, they will face a higher risk oflong-term disability (Topp et al., 2004; Williams et al.,1996), learning difficulties and, in particular, languagedelay (Hay et al., 1987b; McMahon and Dodd, 1997;Thorpe et al., 2003). The environment of a twin child(or triplet) differs in many ways from that of a singleborn (Bryan, 1992) and may have a significant effect onthe children’s development. From the start, twins mustshare maternal and paternal attention. Communicationwith the parent will also almost always happen withina threesome rather than one-to-one. Furthermore, twinshave the constant stimulation of a partner of the sameage and competition, but rarely, if ever, experience soli-tude. It is valuable for parents to be introduced duringthe pregnancy to the importance of encouraging indi-viduality. It will also allow them, in turn, to educategrandparents and friends who may otherwise shower thefamily with pairs of identical outfits.

Risks of complications

Parents should be made aware of the much greaterrisks of prematurity, low birthweight and intrauterinegrowth retardation with multiples than singletons, andbe given an opportunity to discuss the implications. Thehealth and survival of their babies are the paramountconcern and anxiety expressed by mothers (Spillman,1992). These concerns should be addressed early in thepregnancy and the parents kept fully informed aboutany complications as well as being involved in anydecisions concerning clinical management. Other, rarercomplications may occur later in pregnancy and needaddressing as they arise. These are discussed in moredetail later.

Many couples have difficulty in understanding the sig-nificance of a monochorionic pregnancy and the conceptof the twin–twin transfusion syndrome. Their familydoctor and midwife may not be able to enlighten them.Parents have also been disconcerted by the ignoranceof their own doctor concerning selective feticide for a


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congenital anomaly (Bryan, 1989), multifetal pregnancyreduction (Bryan, 2002) and the implications of a singleintrauterine death. Clear information should be providedto all the family’s health carers when special conditionslike these arise. The MBF produces leaflets on these sub-jects, which are written for parents but may also usefullybe shown to their own carers.

Although couples appear to cope well with the emo-tional stress of a multiple pregnancy, they find the phys-ical stress considerably greater and need warning andsupport for this (Thorpe et al., 1995).

COMPLICATIONS

Selective feticide

The identification of a serious abnormality in one twinand the decision to proceed with selective feticide willpartly depend on individual circumstances and partlyon whether the child is likely to die at or soon afterbirth or survive handicapped, perhaps for many years. Afurther consideration must of course be the continuingsafety of the unaffected twin fetus. An abnormal fetusmay actually jeopardise the life of the healthy child, asin cases where an anencephalic causes polyhydramniosand thus causes premature labour (see Nicolini et al.,this issue). In cases of anencephaly or other lethalconditions, some would recommend selective feticide inthe first trimester as being safer than later in pregnancy.Others would suggest waiting to see if polyhydramniosdevelops. A further consideration is the parents’ wishesabout possible organ donation.

The choice of timing for a selective feticide hasbecome wider in recent years (Evans et al., 1999). Onthe one hand, with the earlier diagnosis of a multiplepregnancy and the development of first-trimester prena-tal diagnosis, a larger percentage of couples can chooseto terminate early in the pregnancy. On the other hand,with the introduction of new legislation in the UnitedKingdom and several other countries, parents now havethe option to delay selective feticide until the thirdtrimester with the advantage of avoiding risk to the lifeof the co-twin should the procedure precipitate prema-ture labour.

These choices may add to the parents’ dilemmas andit is yet to be established which timing most parentsfind the more acceptable. In singleton pregnancies,Evans et al. (1996) found that the main predictor ofthe decision to abort was the severity of the fetalprognosis and that gestational age at diagnosis was notan important factor. A selective feticide is very differentto an abortion as the pregnancy continues with the deadfetus. Another factor is that a third-trimester feticide canlead to conflict between parents, as some will not be ableto accept a pregnancy termination beyond fetal viability.

Selective feticide is a superficially easy solution, butmay seem bizarre and horrifying to many parents. Manyparents will not have even heard of selective feticidebefore being faced with the option. Few, if any, willknow another mother who has undergone the procedure.

The difficulty of coming to terms with this reaction maybe greater when relatives and friends are told about itand show their own reactions.

Not surprisingly, and as with the termination of sin-gleton pregnancies, partners themselves quite often dis-agree. One or both may have deep religious objections.One, often the mother, may be distressed at the thoughtof losing his/her potential baby, whereas the other parentmay be no less distressed by the idea of having a dis-abled child. Many partners will disagree to some degreeand need to compromise as to what is best for them asindividuals, as a couple and as a family. Both partnerswill need to weigh carefully and sensitively the argu-ments on both sides. Some only come to understand thefeelings and views of their partner with the help of acounsellor.

Professionals need to be aware of their own complexand sometimes contradictory feelings before they offerguidance or support to others. Many parents havebeen disconcerted by their doctor’s ignorance. Theyask advice only to find that the doctor has not comeacross such a case before. This is why managementin a tertiary unit is essential and good communicationbetween community and hospital carers is vital if thefamily’s general practitioner is to be enabled to offerthe long-term support that may well be needed.

A careful explanation of exactly what is involvedin the procedure will be all the more important tothe couple because they are unlikely to find muchwritten information about it. Some mothers have beendisconcerted by the sudden cessation of movements inone part of their abdomen. The side effects of anysympathomimetic drugs given to prevent the onset ofpremature labour may be distressing. It can be veryhelpful for a couple to have contact with others whohave been through the experience and this can often bearranged through ARC or the MBF.

When parents are offered the option of selectivefeticide, they must plainly be told about the potentialrisks. These include precipitating an abortion or pretermlabour, the introduction of infection and the possibility,however remote, of incorrect selection of the target fetus(Evans et al., 1999). On occasions, the procedure offeticide can be prolonged and hence very distressing toparents, especially if they are watching the ultrasoundscan.

Even when it is known that only one twin is affected,parents are likely to worry that the other may havea problem too. For some, this may prove to be acontinuing anxiety that can be relieved only by regularpre- and postnatal examination and ongoing reassuranceor invasive prenatal testing in the surviving twin if thisis possible.

Multifetal pregnancy reduction (MFPR)

Multifetal pregnancy reduction (MFPR) was introducedto maximise the chances of having healthy babies bydeliberately reducing the number of fetuses. Fortunately,the number of higher-order pregnancies in the UnitedKingdom has fallen dramatically in the last few years



due to the introduction of a policy restricting thenumber of embryos transferred to two. Thus, in theUnited Kingdom, fewer couples need to face this painfuloption. There are still, however, countries where higher-order pregnancies continue to increase and MFPRs arefrequently undertaken.

MFPR is never an easy or uncontroversial solution,however, and carries its own risk of medical andemotional complications (Bryan, 2002). The balance ofrisks and advantages will be seen differently by eachpartner, but, for all, there will be much anxiety. There isno easy answer to the dilemmas involved, and the shorttime available between the diagnosis and the optimaltiming for the procedure often adds to the stress.

With improvements in the neonatal care and long-termprognosis of preterm infants, an increasing number ofobstetricians will no longer accept that the medical risksare sufficient grounds for reducing a triplet pregnancy.This puts an added burden of responsibility on to thecouple who would still wish to reduce their pregnancyon financial, practical or emotional grounds. Concernabout these will vary greatly between couples and willnot necessarily correlate with their socioeconomic status(Garel et al., 1997). Nantermoz and colleagues (1991)found that parents, not surprisingly, found it emotionallyeasier if they felt that the responsibility for the decisionwas being carried by the clinicians.

Clearly, for some couples, MFPR will be felt tobe contrary to their religious or ethical beliefs and,inevitably, this will be an important, though not nec-essarily decisive, factor in their decision-making. Allcarers, particularly counsellors, will find it helpful tohave some understanding of a couple’s particular reli-gion and culture (Chertok, 2001).

A key question is whether the parents should tellthe surviving children about the fetal reduction or keepit from them permanently. Medical carers should beprepared for couples to ask advice about this. Somecouples will be determined that the survivors shouldnever know. If such is their decision, it is absolutelyessential that they disclose nothing about it to anyone.One consequent cost of this parental secrecy is that thecouple are inevitably deprived of the support of theirfriends and relatives. Particular sensitivity is needed bythe carers in helping such couples. It is thus vitallyimportant that all those medically involved with thefamily are aware of the circumstances.

For many couples, the psychological trauma of anMFPR will add to a long history of stress due tofrustrated infertility treatment leading to low self esteemand a feeling of recurrent failure (McKinney et al.,1996). They may also be distressed by the seemingly(and often actual) arbitrary choice as to which fetusshould live and which should die. A few parents willfeel a lasting grief and guilt over the death of one ormore potentially healthy children. However, it appearsthat the great majority feel ultimately that they hadmade the right decision (Schreiner-Engel et al., 1995;Garel et al., 1997). There have been a number of follow-up studies reporting mothers’ emotional state followingan MFPR (Kanhai et al., 1994; Schreiner-Engel et al.,1995; McKinney et al., 1996; Garel et al., 1997).

All studies found that many of the mothers sufferedwith guilt and grief initially, but that few had seriousproblems after the first year. Intensity of grief wasgreater amongst younger mothers. Grief tended also tobe greater in those who had previous living children,a religious belief or had had repeated ultrasound scans(Schreiner-Engel et al., 1995). However, the results ofthese studies must be viewed with caution as, unlikemost studies of bereaved parents and indeed of familieswith triplets, who are only too eager to share theirexperiences, the number of mothers who declined toparticipate was high. Whether this reluctance is due tothe persisting wish for secrecy or to feelings of guilt canonly be speculated about.

Britt and colleagues (2001) have described a structuralintervention programme that aims to reduce parentalanxiety and increase bonding to the pregnancy after thereduction, refocusing the couple’s view of the pregnancyas the current ‘twin’ or ‘single’ that it has become.Others feel that this is tending to deny the loss and griefand that the parents may need to go through a processof relinquishment before they can go forward (SullivanCollopy, 2002). Some may need the lost fetuses to berespected and acknowledged by some form of ceremonyor to have a photograph of the ultrasound before thereduction. Others prefer to ‘forget’ what has happened.It is essential that medical records indicate the parents’attitude in this respect.

It is vital for more follow-up studies to be carried outon the impacts on the physical and emotional well-beingof both the parents and the surviving children followingMFPR and selective feticide. The results will not onlysuggest what support should be provided but may wellinfluence policy on MFPR and selective feticide ingeneral.

Finally, should a fetal pregnancy reduction sometimesbe considered in twin pregnancies? This might belogical in view of the recognised greater risks to twinscompared to single-born children, the increased safetyof the procedure and the fact that many mothers arenow conceiving twins in their 40s. Evans et al. (2004)reported than an increasing number of couples wererequesting such a reduction and reviewed their ownexperience. Although, most clinicians are very reluctantto destroy a potentially healthy twin unless there areserious medical maternal indications, others suggestthat the good outcome in twin-reduced pregnanciesshould at least provoke discussion as to whether theprocedure is justified more often than it is currentlypractised (Evans et al. 2004). Certainly, some wouldargue that if the alternative would be a terminationof the whole pregnancy, a reduction to one would bepreferable. However, in the MBF’s experience, manysingle surviving twins are adamantly against reductionsaying that they had suffered profoundly from the lossof their own twin and that the bereavement of thesurvivor by an ‘unnecessary’ fetal reduction should bethe overriding consideration.


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Bereavement

The effect on the parents of a spontaneous first-trimester loss varies greatly. For some, particularlythose considering an MFPR, there may be a sense ofrelief. Others may be ambivalent or have only transi-tory regrets. Some couples, however, may be profoundlyaffected by the loss and need this to be acknowledged(Briscoe and Street, 2003). At whatever stage in thepregnancy a twin fetus dies, and whether spontaneouslyor as a result of medical intervention, parents shouldalways be offered counselling for their bereavement andthe assurance that this is available not only immediatelybut in the longer term (Cuisinier et al., 1996; de Kleineet al., 1995).

Although the surviving fetus should suffer no physicalill effects, the thought of a live baby lying for manyweeks by the side of his dead twin can be verydistressing. Moreover, when no fetus has actually beenexpelled, a natural tendency to deny and forget the sadreality can take over and the feelings of loss and griefmay be unfortunately postponed.

For many parents, the full impact of the bereavementis not felt until the delivery many weeks later of asolitary live baby. This is also when there is finalundeniable proof that the couple will not after all enjoythe special status and pleasures of being the parents oftwins. Greater awareness of the baby that might havebeen is inevitably felt because of the reality of thesurvivor. The bereaved parents have been meanwhilefaced with the contradictory emotional processes ofgrieving for a lost baby during the continuing pregnancy.Now they celebrate the birth of a healthy baby, but withthe mother’s increasing emotional commitment to thisbaby contrasting with the inevitably parallel sorrow inhaving to come to terms with the death of the other baby.

By the time of the delivery, the mother’s carers mayhave forgotten that it was a twin pregnancy. Their con-sequent failure to acknowledge the death of the otherbaby may add to the mother’s distress. This is espe-cially likely to happen if the fetus has died in anotherhospital either following a selective feticide or duringtreatment for, say, the twin–twin transfusion syndrome.In such circumstances, the obstetrician should ensurethat everyone involved with the care of the mother ismade aware of the parental bereavement. Clear docu-mentation in notes and good lines of communication areagain essential here.

At whatever stage of the pregnancy the fetus has died,and whatever its likely appearance, a discussion with theparents is mandatory to determine whether they wishto see the dead baby and whether they want a funeralor memorial ceremony. Parents’ decisions in thesematters differ widely and are sometimes unexpected.Increasingly, couples, who in the past might not evenhave known of the twin pregnancy, have related to thetwin through ultrasound viewing, even if only in the firsttrimester, and want their bereavement acknowledged andmemories preserved with tangible memorials.

Couples should be given plenty of time to reach theirconclusions. A follow-up study of 11 of the first 13

mothers in the United Kingdom to have a selective feti-cide for discordant anomalies in their twins found that allof them felt they had made the correct decision. Many,however, thought their loss had been underestimated oreven forgotten and that bereavement support had beeninadequate (Bryan, 1989). Some mothers later deeplyregret that they were not allowed to see the fetus afterit was delivered, even when it had been dead for someweeks. The lack of respect for the fetus has upset manymothers and, at least in the 1980s, others said their ques-tions about the fetus seemed to be ignored or avoided(Bryan, 1989).

The bereavement was generally felt more deeply whenthe problem was unexpected, such as a chromosomeanomaly or a neural tube defect, than when the couplehad already known there was a risk of losing the entirepregnancy due to a genetic disorder such as cysticfibrosis or haemophilia (Bryan, 1989).

Many mothers find that the physical and emotionalnurturing of the live baby is a full-time commitment.The grief work concerning the lost baby may thereforebe postponed and if it is not resumed later it can giverise to the various syndromes of failed mourning (Lewisand Bryan, 1988). In some cases, however, the mothermay grieve so compulsively for the dead baby that sherejects the live one. Because there is still a live baby,it is all too common for the relatives, friends and evenmedical staff entirely to ignore the bereavement. Theparents’ loss, if acknowledged at all, is usually greatlyunder-estimated. Parents of twins are often made to feelguilty about their grief, as if they were being ungratefulfor the surviving baby.

In coming to terms with her loss, the mother needs tobe able clearly to distinguish the two babies in her mind;otherwise, she may think of the survivor, as one motherput it, as ‘only half a baby’. Naming the babies, evenone who dies during the second trimester, makes it easierfor the parents to distinguish the babies in their mindsand when talking about them. For the survivor, later, itis obviously easier if he or she can refer to a sibling byname. Many parents like to have some form of memorialand this is often appreciated by the survivor. Manyparents welcome suggestions for mementoes includingphotographs of the baby (both alone, with siblings andthe whole family).

However distressing its appearance, some parents willstill wish to have a photograph of the fetus. Clearly,their wish should be respected. Whether or not thisis taken alongside the surviving baby should also betheir choice. Although most hospitals now arrangephotographs of a stillborn infant, fewer routinely offera photograph of the babies together (de Kleine et al.,1995). However, a sketch or painting from photographsor from the parents’ descriptions of the stillborn babycan provide an attractive picture, which parents maybe more comfortable about showing to their friends.This also allows the two babies to be shown togethereven when no joint photograph is available. Again, thisimage may later be treasured by the surviving child. Aphotograph of the ultrasound scan showing both babiesmay, in some cases, be the only tangible mementoparents have of their twins. There are many forms of



mementos. One mother, lacking anything else, foundgreat comfort in having a photocopy of the medicalnotes. A beautiful clay impression of the hands ofan anencephalic fetus was important to another. Onecouple whose twins were miscarried at 22 weeks hada memorial service five years later at which the priestbaptised and named the babies ‘by intent’ and thenprovided appropriately adapted certificates.

The surviving twin

A surviving twin will usually feel the loss of his twinbrother or sister far more deeply than the loss of anordinary sibling. This may be so even when one twin hasdied before or at birth (Woodward, 1998). It is almostcertainly better that the survivor be told about their losttwin from the start. There have been many accountsof painful and unexplained feelings of loss experiencedby surviving twins who had not been told about theirstillborn twin, or indeed discovered it, until decadeslater. If children know they were conceived as a twin,they can be helped in identifying and expressing theirfeelings including possible feelings of survivor-guilt orbewilderment at the apparent arbitrariness of their ownsurvival.

SERVICES PROVIDED WORLDWIDE

Although the financial and practical support providedfor multiple birth families from government sourcesvaries greatly from country to country and even withinsome countries, all too often they are seriously lacking.However, parent-to-parent support is often strong. Someform of association providing information and mutualsupport for parents of twins and for twins themselvesexists in most European countries and in Australia,New Zealand, the United States, Canada, South Africa,Nigeria, Sri Lanka, India, Indonesia, South Korea, Japanand Russia. A national organisation often acts as anumbrella for the local groups or clubs.

In the United Kingdom, the Tamba also provides atelephone helpline and a number of subgroups includingones for bereaved families, for those with a twin withspecial needs and those with ‘supertwins’ (triplets andmore). The MBF was established in the United Kingdomin 1988 as the first organisation to offer professionalsupport to families with twins, triplets and more aswell as information, advice and training to the manymedical, educational and social work staff concernedwith their care. A series of five sets of comprehensiveGuidelines is available for the professional caregivers ofmultiples from before conception through childhood toadolescence (Bryan et al., 2001). All these organisationsbelong to the Council of Multiple Births Organisations,part of the International Society for Twin Studies.Details of these national organisations and of relevantbereavement organisations can be found on the ISTSwebsite www.ists.qimr.edu.au

SUMMARY AND CONCLUSIONS

Multiple pregnancies are becoming an increasingly largepart of the prenatal diagnostician’s workload. Couplesexpecting twins are often unrealistically optimistic andare therefore unprepared for the complications as wellas the practical and emotional impact the birth of twinscan have on the family. All such couples will needinformation and support throughout the pregnancy andin preparation for parenthood. Counsellors need to beaware of the particular stress experienced by those whohave been through prolonged treatment for infertility orwho face the special problems associated with MFPRand selective feticide in addition to the other forms ofbereavement.

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psychological aspects of prenatal diagnosis and its implications in multiple pregnancies

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