PRENATAL DIAGNOSIS, VOL. 13,341-348 (1993)

GRIEF AND MID-TRIMESTER FETAL LOSS

MARY SELLER*, CHRIS BARNES*, SARAH ROSS*, TERESA BARBY* AND

PAULINE COWhEADOWt *South East Thames Regional Genetics Centre, Division of Medical and Molecular Genetics, 7rh and8th

Floors GuyS Tower; ?Department of Psychiatry, Guy’.$ Hospital, London SEl9RT, U .K .

SUMMARY Fetal loss through miscarriage or termination of pregnancy for genetic reasons often provokes the grief of bereavement. This is not fully understood, and the extent of the distress is often underestimated by professionals and family alike. We have examined elements of the normal bereavement process and have found that they may occur in specific and accentuated forms in mid-trimester fetal loss. We discuss our findings in the light of the attachment theory-a psychodynamic model for understanding grief reactions.

KEY WORDS Abortion Bereavement Fetal death Grief Prenatal diagnosis

INTRODUCTION

While stillbirth is now well accepted as an occasion which provokes a genuine and painful bereavement reaction, the same cannot be said about fetal loss earlier in pregnancy (Bourne and Lewis, 1991). However, it is beginning to be recognized that some women who lose a fetus through miscarriage or elective termination of preg- nancy for genetic reasons can experience a grief reaction of similar intensity to that provoked by the death of a partner or child. This may not be immediately obvious but our attention has been drawn to it by the efforts of a few individuals who have studied affected women (Donnai et al., 1981; Lloyd and Laurence, 1985; Elder and Laurence, 1991) and by the women themselves in the form of self-help groups (Miscarriage Association; Support After Termination for Abnormality). However, awareness of this does not mean that we understand why it should be so: indeed, it was recently questioned why the death of an abortus should be ‘a unique zone of grief (Editorial, Lancet, 1991). It is easy to comprehend how devastating it may be to lose a partner with whom one has long shared experiences, emotions, and com- panionship, but it is far less easy to understand how the same depth of grief can be felt for a fetus who has existed for such a short time and, in reality, has never been a person. This question does not seem to have been addressed and is usually glossed over in passing, with comments such as ‘an unknown potential has been lost’ (Editorial, Lancet, 1991). We present some observations and reflections on this subject from our experiences of working in a genetic counselling clinic. We first summarize some of the current thinking on the processes of grief and bereavement, and then place the experiences of women who have suffered mid-trimester fetal loss

Addressee for correspondence: Dr M. J . Seller, Division of Medical and Molecular Genetics, 7th Floor Guy’s Tower, Guy’s Hospital, London SEI 9RT, U.K.

0197-385 1/93/050341-08$09.00 0 1993 by John Wiley & Sons, Ltd.

Received 24 April 1991 Revised July 1992

Accepted 20 August 1992

342 M. SELLER ET AL.

within this context. Finally, we discuss our findings in the light of a theoretical psychodynamic model for explaining grief, in an attempt to understand why the grief is often so profound.

GRIEF

Grief is a term which is generally used to describe the deep, intense sorrow associated with the loss of a loved person. In his classic work on bereavement, Parkes (1972) points out that grief is essentially aprocess, rather than a state, involving a reaction which is both emotional and behavioural in content. He identifies the elements of a grief reaction, referring to bereavement as a stress situation in which anger, guilt, and anxiety exist as normal components of grief. Worden (1991) agrees that grief includes both physical and emotional aspects, but prefers to describe the grief process in terms of ‘mourning’ or ‘adaptation to loss’.

GRIEF AND FETAL LOSS

The most common manifestation of guilt in women who have had a fetal loss is that they are frequently seriously tormented by thoughts that they might have indulged in activities which were teratogenic, even if (as is usual) in reality there is no basis for such beliefs. ‘What did I do that was wrong? or ‘What didn’t I do?’ are always near the surface. Guilt is often more focused in cases where the fetus is lost because of a genetic disorder, for parents will feel that it is their fault that their child is abnormal because they have passed on the gene. Since we can neither control the genes that we have nor choose the ones that we pass on to our children, guilt might seem inappro- priate in this instance. But having an abnormal gene, and the potential for producing an abnormal child, is something with which the parents have to come to terms. It is a reality and involves a change of body image. There will be grief in accepting it and guilt that the situation exists. If other close relatives are also at risk, then there may be guilt and grief because they feel responsible for the misfortune and suffering of others too. If the inheritance pattern is less certain, then there can be a combination of anger and guilt: ‘Where did the gene come from?’; ‘Whose fault was it?’ Such situations can sometimes result in marital discord and even marriage break-up.

Guilt may also be heightened because many genetic conditions are so rare that people have not heard of them. When a genetic disorder is diagnosed, the parents have to rely on explanations given them by doctors. They are usually in a state of shock and are confused, and although they make an informed decision to terminate, they are unable to retain all this new information. In the succeeding weeks and months, they may become troubled by doubts and anxiety that it may have been the wrong decision. It may be necessary for counsellors to reiterate several times that the condition which had affected their child really was a serious genetic abnormality, and that their decision to terminate was justified on these grounds. A related aspect to this is that with a termination of pregnancy, there may not be a post-mortem examination, so in some people’s minds there is the possibility that the diagnosis was wrong and the fetus was not abnormal after all. One couple who had two successive terminations for genetic reasons said the second was much worse than the first because they had cherished the thought that the doctors had made a mistake the first

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time. With the second, they could no longer deny the presence of a serious genetic disorder in their family.

Guilt may arise over a perceived stigma attached to termination of pregnancy, even for genetic reasons. Some people choose to tell their friends and family that they have had a miscarriage rather than a termination for fear of criticism, so there is also anxiety that people will find out what they have really done. This makes it more difficult for even a supportive network to provide appropriate comfort. Another form of guilt occurs in those women who view the pain of the bereavement that they are suffering following a mid-trimester termination as a punishment for having the termination, rather than having let the baby be born and allowing nature to take its course. They feel that they have let the fetus down and that they should have seen it through, believing that although they have no control over their genes, they are responsible for their own decisions, and if an abnormal baby is what was ‘meant’, they have taken the easy way out by having a termination.

Guilt feelings are sometimes expressed by the bereaved woman as anger towards everyone involved in her antenatal care. She may try to find someone else to blame so as to find an explanation for what went wrong, as in ‘The baby has Down syndrome because they told me I was too young for an amniocentesis.’ Unfortunately, it is easy for professionals to react in a defensive manner to such a situation, and to fail to understand such anger as a normal component of grief. Anger directed against professionals can come about in other ways too, for example because of feelings of abandonment which are often experienced in bereavement. The anger would there- fore appear to have its origin in the one who is lost, but it is often displaced and vented on other people, including those trying to care for them.

Anxiety commonly takes the form of women believing that they can never have a normal baby. Another major anxiety is linked with the prospect of prenatal diagnosis-the stress of the test itself, the waiting time for the results, and then the fear of another abnormal fetus. For certain abnormalities such as the skeletal dysplasias, waiting may be very prolonged, for it may not be clear that the baby is unaffected until late in the pregnancy. Women who have experienced fetal loss for any reason are often very anxious, and each may well find something specific which troubles her. An example of such irrational fears is the woman who would not fly home to Ireland to spend Christmas with her family because a common factor in the three miscarriages that she had had was that she had flown not long after conception.

Parkes (1972) states that the experience of grief is seldom one of prolonged depression, but of acute and episodic ‘pangs’: episodes of severe anxiety and ‘psychological pain’. In a normal grief reaction, such pangs are very frequent for a period immediately after a bereavement, eventually occurring less often and in response to specific memory-inducing events. However, in fetal loss, it may be diffi- cult for such ‘pangs’ to become less frequent, because of constant reminders of the ‘lost’ baby. Women often comment upon the frequency with which babies feature in most aspects of social life, from the supermarket to the outpatient department to the public transport system. Because of the difficulty in findinga ‘baby-free zone’, many women report how they avoided social contact after the loss of a much-wanted pregnancy, only to stay at home and experience television programmes and advertise- ments in which babies werecentral. Social isolation is often worsened, and the process

344 M. SELLER ET AL.

of grief prolonged, by friends who are already parents avoiding the grieving woman because of the combined difficulty of being there with their own healthy baby and of ‘knowing what to say’, and of wishing to avoid ‘upsetting’ their friend. Hostile and negative remarks from friends like ‘Well, if you will go off and have these tests which have risks, what do you expect?’ to a woman who had miscarried after a CVS cause distress and intensify the guilt and anger which are part of the grief reaction.

Another feature which may occur in fetal loss is delayed expression of grief. One instance is of a woman who experienced an extremely severe reaction to a genetic loss, and it transpired that at the age of 16 years she had had a social termination. It was now that she was feeling guilt for this, believing that God was ‘getting even’ with her by giving her an abnormal fetus in return for her having ‘got rid of the earlier one. Another example of a grief reaction emerging at an unexpected time is a husband who supported his wife magnificently with a ‘stiff upper lip’ through a distressing mid-trimester termination of a genetically abnormal fetus, but it was in the next pregnancy, after an amniocentesis had given a result indicating a normal baby, that he went ‘completely to pieces’. It is important to recognize that a father may be markedly affected by grief over the loss of ‘his’ fetus. This example emphasizes how the two partners, although both experiencing grief, may express it differently. Such a situation can lead to misunderstanding and disharmony, one partner believing that the other ‘doesn’t care’ about the loss, at a time when mutual support is crucial.

Overall, our experience is that in the process of grief in fetal loss the ‘normal’ elements of guilt, anger, and anxiety identified by Parkes (1972) do occur, but they may often be observed in specific or accentuated forms.

MOURNING FETAL LOSS

Mourning plays an important part in recovery from any bereavement. Worden (1991) believes that it is necessary for a bereaved individual to complete each of four ‘tasks of mourning’ before further personal growth and development can occur. This involves accepting the reality of the loss, working through the pain of grief, adjusting to an environment in which the deceased is missing, and emotionally ‘relocating’ the deceased and moving on with life.

In fetal loss, each ‘task of mourning’ has certain additional complications. Accepting the reality of the loss is often more difficult for women who have not seen the fetus, and the trend towards giving parents this option as a matter of routine is to be welcomed. One woman, who had had both a mid-trimester and an early suction termination of pregnancy because of an autosomal recessive condition, said that the latter was far worse than the former because there was no fetus to see and hold.

Management at the time of fetal loss is crucial, and a case can be made for some sort of ‘ceremony’ being available to mark the event, not necessarily a formal religious occasion, but something to enable a ‘goodbye’ to be said so that the process of mourning may begin. A couple who did not want a ceremony requested to know what time the fetus left the department after the post-mortem examination so that they could be together and mark a precious few moments to think about the fetus. For them it was an ending, so that they could start life again. Another couple who

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had a 20-week termination and then a late stillbirth were distressed because they were having a funeral for the stillbirth but they had no ceremony for the earlier fetus. This was resolved by placing a photograph of the fetus in the coffin of the stillbirth and remembering both in a ‘joint’ ceremony.

Women are often hampered in the task of working through the pain of grief by the minimization of their feelings by others, as in ‘It was only a miscarriage’ or ‘You are young enough to try again’. It is already more difficult in some ways than mourning an adult or a child because there is usually no grave or photograph. Well-meaning friends sympathizing over the termination of an abnormal fetus may say ‘You are better off without it’, overlooking the fact that it is often a much wanted pregnancy. In a similar manner, friends and family anxious to offer comfort may say ‘You’ll be all right once you have had your next one’, not realizing that it denies the existence of the current abnormal fetus and the grief being experienced. Unfortunately, such comments are not solely attributable to the general public. Worden (199l)comments: ‘future pregnancies are certainly a concern of the woman, but many physicians, in their discomfort over a miscarriage, may deal with this by focusing on this issue alone’. Obstetricians and midwives surely have the best of intentions and mean to be reassuring and optimistic to their patients. However, a logically correct and apparently encouraging statement such as ‘Don’t get upset, consider yourself lucky: there are many women who are infertile and will never have a baby, while you can have another very soon’, can be heard as insensitive and irrelevant by a woman who has lost a fetus. Clearly such a remark is wrought not out of lack of interest or coldness, but by a lack of understanding of the nature of fetal loss. But the effects can be profound. As a result of that particular comment, the woman concerned felt that she could not discuss her fetal loss with any other professional, and she believed that she could contemplate another pregnancy only if she moved house first to ensure that she did not see that obstetrician again. It is surprising how inaccurate some doctors still are on the subject of basic genetics. One woman reported how she was told ‘The only thing you should do is not have any children; if people like you didn’t have children, we would eliminate genetic disease.’

Another possibility which might make the professionals feel better, but does not necessarily help the woman, is ‘Don’t worry, you can have a test next time.’ Firstly, this is based on the assumption that this is what she will want, although she may not. Secondly, it is as if having a test available for next time makes it all right that she has lost her present baby.

Yet a further example of professional insensitivity was to a woman in hospital on bedrest bearing twins, one of whom was normal and the other had trisomy 18. A succession of midwives and doctors visited her, asking ‘What is wrong with your baby?’, ‘What is Edward’s syndrome?’, not appreciating that she was having to come to terms with a fatal condition in her baby and could not speak about the syndrome with clinical detachment. The tasks of mourning for that particular woman were very complex as she needed to go through the process of grieving for the baby who was going to die, at the same time as getting ready to have a normal baby.

For women who have experienced fetal loss, ‘adjusting to an environment in which the deceased is missing’ means the environment of the mind, for it is all the projected thoughts of the future with the child, and of parenthood, which have come to naught. Women conceive a child for a variety of reasons. Some do so as a

346 M. SELLER ET AL.

perceived way of overcoming a problem, such as effecting much sought changes in their life, perhaps escaping from a difficult family situation or compensating for missing constituents in their life such as love and protection. Consequently adjust- ment to an environment-the future-where the fetus is now missing may be complicated, and professional help may be required. It may be particularly difficult for women who are childless. They have invested in a future identity of parenthood, which has now been withdrawn.

The fourth task of mourning-that of emotionally relocating the deceased and moving on with life-is often misunderstood, with bereaved individuals fearing that they are somehow being disrespectful to their lost fetus by planning for the future. We have experience of women whose plans for a future pregnancy have been ham- pered by a feeling that to conceive again is finally to ‘give up’ on a lost fetus. Also, the investment of emotional energy in the pregnancy and in the expected child is often profound, as previously mentioned, and cannot be simply transferred overnight. Furthermore, if fetal loss is associated with a single gene disorder where there is a consequent high risk of recurrence, a woman is likely to have entirely understand- able concerns about transferring her energies to a future pregnancy which has a high risk of repeating her tragedy. In such situations, the resolution of grief is complicated by a need to prepare for the possibility of repetitive fetal loss.

Frequently, within 3 months of the loss, women will ask about options for a future pregnancy. Seemingly, they are moving on with life. However, it must not be assumed that they have relocated the fetus and finished grieving. It may well be a sign that the process of mourning is progressing, but one day they may feel good about the future and so want information in order to plan; another day, however, all they can think of is the earlier disaster of the lost fetus. Mourning is a slow process.

DISCUSSION

These observations have confirmed that the loss of a fetus can cause intense grief reactions, often commensurate with those experienced over the loss of a spouse, a parent, or a child.

The psychodynamics of the reaction to the demise of a spouse have been well studied (Parkes, 1972; Worden, 1991), and there are a number of theories which attempt to explain grief. Many believe that the intense feeling of sorrow arises in the face of the underlying phenomenon of attachment, worked on principally by Bowlby (1977). From childhood through to adult life, we develop emotional bonds with a small group of people, first our parents, then particular peers, because we have a basic need for safety and security. It is a normal part of adult life as well as childhood. If at any time these bonds are threatened, then specific and intense emotional and behavioural reactions ensue-fear, anxiety, and restlessness-the severity matching the potential gravity of the loss. Attachment is well documented in a variety of animal species too; thus, it would seem to be a primitive biological process, which Bowlby (1977) believes is necessary for survival. In humans, when someone dear is lost through death, there is a combination of these basic and innate behavioural responses to the removal of the attachment figure, with certain grief reactions specific to humans, such as guilt, anger, and helplessness (Worden, 1991). Together, these can provoke feelings of devastation of overwhelming intensity.

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Taking this behavioural model and relating it to our experience of women who have had fetal loss, it appears that whilst the fetus has never lived a separate existence and been a real person, a fetus can nevertheless still be a very real image to a woman from the very earliest stages of pregnancy. In her mind, she sees it not as a fetus, but as a baby or child-a person. Often, this will remain so: a woman who, long ago, had a first-trimester miscarriage, said ‘He would have been 40 years old now.’ Sometimes even early miscarried abortuses are given names. This image is of the perfect child, and in this the woman invests her hopes for the future-of parenthood, of family life, of joy and happiness, and also her own needs for the future, of receiving, as well as giving, love and nurture. She fulfils in this projected person her aspirations for the next phase of her life. In so doing, the fetus can be construed as being a source of security and safety, and thus, an attachment figure. Consequently, the sudden loss of the fetus may provoke the characteristic and deep grief reaction experienced when a recognized attachment figure dies. The woman may experience the loss of the fetus as a loss of part of the present, the future, and a part of herself too. That such a reaction is not simply the result of losing the fetus per se can be seen from the fact that many women who have a termination of pregnancy for social reasons do not experience anything similar (Pare and Raven, 1970)-when the fetus is unwanted and a threat to the future, there is usually little grief as presumably no attachment has been made.

There is one respect in which the loss of a partner or child is different from the loss of a fetus, and this gives further insights into the reasons for grief over fetal loss. In the former case, deep grief is a universal experience, whilst in the latter, it is not always the case. There is a cohort of women who, despite the fact that the pregnancy may have been planned and the fetus is wanted and already loved, can recover from the trauma of a fetal loss surprisingly quickly. This could be related to the fact that it is actual experiences of the attachment figure which are lost with a partner or child, but expectations and imagined experiences which are lost with a fetus. Expectations of hoped-for experiences can be less potent than the experiences themselves. Parents of a dead child will always say that that child can never be replaced even though they may have other subsequent children, as they have memories of him/her as he/she really was. However, this does not seem to be true when a fetus is lost. Parents say that the experience of having a fetus is never forgotten, but the joy of later having a normal baby diminishes its importance.

Contrasting reactions to fetal loss can also be understood by acknowledging that there are differences between women in their reasons for conceiving a child, and also in the relative place the forthcoming child occupies in the overall perspective of their lives. Some women seem only to fulfil themselves through having a child. Others conceive a child in a desire to satisfy specific personal needs or to overcome inadequacies in their life situation. It may be that security and safety, both in the present and in the future, reside almost wholly in an image of a person and a relationship which are yet to be. It is hardly surprising, therefore, that when fetal loss denies someone what they feel they need for themselves, it provokes such an intense reaction. But other women may fulfil themselves in ways in addition to becoming mothers, such as in having other significant relationships, and/or having a career or being active in other areas of life. Their futures are not solely invested in the fetus, for there are other things which give them security and safety, and loss of a fetus, while a painful experience, is less devastating.

348 M. SELLER ET AL.

Another factor which may be influential in the reaction to fetal loss is the existence of previous unresolved losses of any type, and the support network of family and friends. However, although all these perspectives are borne out to some extent in practice, it is difficult reliably to predict in advance who will, or will not, experience a severe reaction. This may be because of the ‘hidden agenda’ which we all carry and of which we have little prior knowledge.

Experience has shown that the expression of sympathy alone is not, in itself, adequate to help women who have had a miscarriage or termination of pregnancy for fetal abnormality and who are experiencing profound grief. Sympathy needs to be accompanied by an understanding of the nature of fetal loss and the process of bereavement which may ensue. We have illustrated how unique and specific some of the manifestations of grief are, and have attempted to understand why it is that grief can be so profound by relating fetal loss to the attachment theory-one of the psychodynamic models for explaining grief. It is our belief that the number of women experiencing longer-term unresolved grief and depression would be reduced if such understanding was present in all whom they encounter during and after their fetal loss.

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