Genetic Counselling In Pregnancy

by Anne Neville
R.N., R.M., Dip. Past. Psych., Dip. Marriage & Family Therapy,Cert. Interpersonal Relationship Therapy,  Accredited Grief & Loss Counsellor National Association of Loss & Grief (Vic) Clinical Member CAPAV. PACFA Reg: 21127

“A client’s quick decision to terminate may actually reflect an attitude of hopelessness on the part of the doctor or counsellor.”

[Psychological implications of pregnancy. Reactions to pre-natal testing and unfavourable diagnosis. Termination: factors in decision making. The role of the counsellor. Post abortion counselling. Case examples.]

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Alice was a very precious and much wanted baby of parents, Jennifer and Stephen, who have suffered a large number of pregnancy losses. When this pregnancy made it past the point where the other pregnancies had miscarried, and things were going well, Jennifer and her husband felt they could finally relax and enjoy the pregnancy.

However, at 16 weeks there seemed to be a discrepancy in the baby’s size according to dates. A subsequent ultrasound and follow-up tests revealed that the baby had a chromosomal abnormality, Trisomy 18, often not compatible with life. Doctors thought that the pregnancy would possibly not go to term. The parents were devastated.

Based on their Christian beliefs, a prior experience of the grief associated with pregnancy loss, and background knowledge of parental grief through their association with Open Doors, Jennifer and Stephen decided to continue with the pregnancy and formed a very strong bond with their child. They identified the baby’s sex, named her and from then on she was constantly referred to in a very intimate way, not only by her parents but by all who were privileged to know Jennifer and Stephen and share in their experience to some degree.

With the assistance of their obstetrician, a paediatrician was found who was open to Jennifer and Stephen’s wishes concerning treatment for Alice. Hospital staff members encouraged the parents to decide how they wished the post delivery period to be handled and planned to provide Jennifer and Stephen with every opportunity to be with Alice and create their special memories of their precious child. How long they might have Alice with them was a great uncertainty but the plan was for Alice to be a part of their family for as long as possible.

As the expected date of Alice’s birth drew near, Jennifer shared with me that she was enjoying her pregnancy and would not have missed the opportunity of having seen Alice via the ultrasound and felt her move. She anticipated holding her after birth. However she spoke with sadness. Her bags were packed but there were no plans for a nursery.

Little Alice has touched the lives of a large number of people and her parents’ courage has been a source of inspiration to all who have known them. They made a decision that was right for them and allowed themselves to form a deep and personal relationship with their child. Not knowing how long they would have her, they planned to make the most of whatever time there was.

This is a true story and it was the wish of the couple involved that they and Alice be referred to by their correct names.

 

‘A Normal Child’

When a couple plans a pregnancy they naturally expect to deliver a `normal’ child, but it has been estimated that 2% of pregnancies will have an abnormal outcome (White van-Mourik, 1994).

Developments in obstetrics, biochemistry and cytology over the past twenty years have changed the face of reproductive medicine. The use of prenatal procedures such as the ultrasound, amniocentesis, maternal serum screening and chorionic villus sampling are in the process of becoming an integral part of obstetric care, allowing couples, like Jennifer and Stephen, to avail themselves of prenatal diagnosis that previously was not an option. In Victoria 97% of pregnant women have one or more ultrasound scans during pregnancy. Just over 70% do so to check for a foetal abnormality (Lumley, 1994), however, many women may mistakenly see the ultrasound as a therapeutic tool rather than a diagnostic one.

Parents participating in prenatal diagnostic procedures are implicitly confronted by the possibility of dealing with a pregnancy loss, as the option to terminate an `abnormal’ pregnancy is a reality. To hear the words, “I’m sorry to have to tell you that your baby has a serious problem” is devastating and may take some time to come to grips with.

Being faced with such a decision has profound psychological effects not only for the parents but also for extended family and friends and draws our attention to the importance of effective counselling. Initially this was thought to be the province of the scientist who would supply all relevant information on a medical level. Physicians, paediatricians and geneticists who are skilled in providing detailed and informative genetic counselling will be practised at providing information, obviously a very necessary part of assisting the woman/couple to digest the nature of their baby’s problem.

However, the giving of factual information and the “technical” presentation of options are not of themselves sufficient for the individual or couple faced with an unfavourable prenatal diagnosis. The woman/couple usually need frequent access to support and guidance during the decision making period. This is when independent counselling can be of great value.

Psychological implications of pregnancy

Blumber (1984) describes pregnancy as a point of “psychobiologic crisis” when a woman is forced to reconsider her role in life and her self-image. It is a time when the woman turns inward to examine the profound biological changes taking place. These are accompanied by normal emotional adjustments similar to those experienced at puberty and menopause. During the initial stages of pregnancy there is a preoccupation with the psychological and anatomical changes which then gives way to a growing awareness of the developing foetus as an individual – a separate entity.

Giving birth to a child is “a uniquely feminine capacity and experience” and seems to be related to fundamental forms of feminine fulfillment and creativity (Walsh, 1982). The natural elements of attachment, continuity and creativity seem to come into being, either consciously or otherwise, as the pregnancy proceeds.

In western cultures there is still debate regarding the status of the unborn. However, there would be little dispute that the relationship with the foetus usually begins quite early, especially in a planned pregnancy. I have found this also to be the case where the pregnancy is not planned and the woman is faced with the dilemma of whether or not to continue the pregnancy. Her body language is often protective of the foetus she is considering aborting – her arms folded over her abdomen or even actually stroking or patting her abdomen. When her attention is drawn to this she often becomes very emotional and talks of her child in a personal way.

‘Quickening’ (the first discernible foetal movement) has been considered a milestone in pregnancy and one where personification of the foetus was more readily acknowledged. This is usually felt by the mother between 16 and 20 weeks. However, new medical developments now mean that foetal life is seen and heard as early as 6 weeks i.e. 2 weeks after the first missed period.

For many dealing with ambivalent feelings towards a pregnancy, planned or otherwise, the ultrasound provides indisputable evidence of the developing foetus. It is often at this point that the parents’ relationship with the foetus may change considerably. Many couples delight in the first photo of their child – the ultrasound – routinely done to exclude an anomaly at 18 weeks. The paternal bonding process is thought to be accelerated by the visual evidence of the developing and mobile foetus.

Common reactions in the testing phase

The psychological impact of prenatal testing may be felt not only prior to procedures being conducted but also prior to conception where the potential for an abnormality exists. This is also the case where there has been a previous abnormality. The couple is placed in the position of anticipating a repeated pregnancy loss. Their level of anxiety is usually demonstrably higher in the early stages of pregnancy than, for example, when testing is done because of problems associated with maternal age (Beeson and Golbus, 1979) even though there is an identical 1% likelihood of an abnormality being discovered. The trauma associated with a previous loss due to a foetal abnormality may be reawakened and relationship difficulties may arise from the stress that is evoked at this time.

Where there is a suspected abnormality, the ensuing maternal/parental response may be an attempt to reverse the bonding and secure an emotional distance until tests are complete or diagnosis is found to be favourable. A conflict is set up very similar to that seen in the normal grieving process – that of denial. The healthy psychological response to trauma accompanies the anticipated shock and grief felt at this time. The body actually experiences biochemical reactions which enable it to adjust in order to cope with the reality of the situation.

Often the onset of foetal movements exacerbates the level of stress at this time. There may be an attempt to deny the foetus is a child, even after an ultrasound has been done. For example, the mother may delay pregnancy related behaviour such as wearing maternity clothes or even misinterpret foetal movements as wind pains.

The anxiety associated with waiting for testing to be done or for the results may produce a variety of somatic symptoms as well as emotional reactions. Preoccupation with physical ailments may serve as an escape from the reality of the situation. A client I shall call “Marcie” told me that she had never experienced so many non-specific physical ailments as she did when awaiting test results. The waiting time was spent going to her doctor checking out these complaints, all the while vigorously denying the connection with her state of anxiety. The heightened self-interest deflected her attention from her baby with whom she did not dare attach. Also she did not want to admit being pregnant to her friends and extended family and so used her ailments to enlist their support without exposing the true nature of her need.

The dilemma is often compounded for the woman undergoing amniocentesis, as she is concerned not only for the uncertainty of the procedure for herself but also because of the risk of injury to the foetus. The risk of miscarriage associated with invasive procedures such as chorionic villus sampling (CVS) may heighten her fear, anxiety and sense of conflict. She may fluctuate in and out of denial and experience confusion regarding her true feelings about her baby. She is in a state of suspended animation. After all, she does not know if she and the child have any sort of future together.

Reactions to an unfavourable diagnosis

When an unfavourable diagnosis is made, the emotional reaction usually is characterised by shock, disbelief, anger, sadness and confusion – all elements of the grieving process. Whether or not the risk of an abnormality had been high, the reaction is usually the same. The woman is faced with the reality of the situation and is now in crisis. The need for a decision to continue with the pregnancy or to terminate it now becomes the focal point.

The woman’s self-esteem usually suffers when confronted with the test results. She often feels a total failure; unable to carry out the task that most women seem to do so easily – that of bearing a normal child. She may question her femininity. She may take on complete responsibility for the problem – blaming, cross-examining, questioning her activities, searching for a solution.

She may feel as if this abnormality is some sort of punishment – perhaps for any ambivalence she may have felt towards the pregnancy or perhaps for some other `misdemeanour’ (for example, a prior abortion). She may find herself wishing to miscarry so that “nature” will take care of her problem, sparing her the agonising decision of whether to proceed or terminate. Perhaps she now feels guilt for such a thought. The danger exists for her to make a quick decision to terminate the pregnancy before allowing herself to consider all alternatives.

It is common for the woman to feel some degree of anger. In her pain she may lash out at her doctor, her partner, herself and God. She may indeed ask “Why?” and find it impossible to understand why this incredible experience should be part of her life.

Tension can mount between partners, especially where one reacts differently to the other. The male may be less expressive, leading his partner to believe that he may not care as much. She may feel abandoned and subsequently withdraw, not understanding that he may in fact be hiding his true feelings from her in order to be strong for her.

The answer to this dilemma is not an easy one. It is one that needs to be explored from a number of perspectives, not only that of the purely physical considerations of the infant’s impairment. There are the emotional, psychological, moral and religious viewpoints of the individuals involved which are all contributory factors in the decision making.

Often a previously held view may change when a person is actually confronted with the reality of the diagnosis. For instance, someone who may have believed that she would never have contemplated abortion may now feel it is the only option. Likewise, a woman previously convinced that abortion in the face of an abnormality would be the natural choice may suddenly find herself filled with doubts.

I think Bruce Blumberg conceptualises the conflict involved rather well in the following diagram, showing the push/pull of the emotional, the rational and the moral issues involved:

Terminate or continue?

The woman is now confronted by the reality of the situation and is in crisis, having to make a decision that will impact dramatically on her and her partner’s lives. The dilemma is for the couple to endeavour to cope with an impaired child or take “an active and `causative’ role in their pregnancy loss”, i.e. decide on an abortion (Blumberg, 1984). For a child to predecease a parent goes against the natural order of things, so how much greater the anguish when one is to consider a decision to foreclose on the life of one’s offspring?

Reasons often given for terminating

  • Out of love for the baby and/or not wanting the baby to suffer
  • The adverse effect an abnormal baby may have on herself and family. Feeling she/they cannot cope emotionally
  • The possibility of the need for multiple surgeries or for extensive hospitalisation
  • The baby has been given no chance of surviving after birth and perhaps not even going to term
  • Frightened or repulsed by the prospect of carrying a dead baby for any length of time
  • Afraid of becoming too attached to the baby and becoming even more stressed after the birth
  • Wanted to get the pregnancy over with as soon as possible
  • The challenges of raising a mentally retarded child were too great
  • Thought termination was the lesser of two evils
  • In the case of multiple pregnancy – selective reduction i.e. the number of foetuses is reduced
  • To preserve a relationship.

(Ilse, 1993)

Reasons for continuing

  • The possibility of the tests being wrong or the condition less serious
  • Wanting to give the baby every possible chance
  • Wanting to have as long a relationship with the baby as possible and let nature take its course
  • Believing that abortion is wrong no matter the reason
  • Deciding to accept a less that “perfect” baby
  • Considering adoption if unable to mange later on.

The role of the counsellor

Working with the woman participating in prenatal testing can be difficult for the counsellor as it involves working closely with someone who is faced with the possibility of a traumatic outcome to an anticipated positive event. It can be a test in objectivity in a potentially emotional minefield – one with which most women could identify. It is essential that the counsellor has access to supervision and support of his/her own when working in this area.

Counselling management needs to be non-directive, focusing on crisis intervention, support, effective gathering of information and grief issues. The counsellor needs to be mindful of any temptation to become the “rescuer” or, alternatively, any tendency to want to take flight in the face of such painful conflicts and issues.

I believe the application of crisis intervention principles to be the first step in effective counselling for the individual or couple facing a prenatal diagnosis for foetal abnormality. The diagnosis certainly brings the situation to a point of crisis as well as loss.

When a crisis occurs, a person usually reacts by drawing on coping mechanisms from his/her own personal resources, the support of family and friends and, perhaps, past experience of dealing with a similar crisis (Sainsbury, Lambeth, 1988). Faced with an adverse diagnosis, the client’s usual coping mechanisms may be ineffective in reducing anxiety and other symptoms to a manageable level.

The client may develop a dependency on the counsellor to some degree for both diagnostic and therapeutic types of understanding. There is a need for both the provision of a supportive and structured environment to work through the associated feelings and also the assistance to define and explore the entire range of possibilities, choices and outcomes.

It is the responsibility of the counsellor to maintain objectivity in order to help the woman explore all avenues, seeking balanced and comprehensive information before making her decision. The tendency may be to make a hurried decision; one that is sometimes influenced by the gestational stage of the foetus. On a psychological level, there may be the desire to return to the pre-pregnant state in an attempt to deny what has happened and to wipe the slate clean.

One needs to be aware that a client’s quick decision to terminate may actually reflect an attitude of hopelessness on the part of the doctor or counsellor. When giving a diagnosis of severe impairment with a poor prognosis, care must be taken not to influence the client to think that termination of the pregnancy is the only option available. The counsellor needs to be aware of his/her OWN responses to the issues involved in order to be effective in assisting the woman to make HER own decision.

I remember very distinctly a prospective grandmother’s sadness when she told me how her daughter’s pregnancy had been terminated for an abnormality. Her words to me were, “They had to take the baby, you know”. The implication was that there was indeed little or no choice. She said that in the course of tests and diagnosis, the option of letting nature take its course was not explored to any great degree. The question was not whether her daughter would choose to terminate but when.

This illustrates the degree of powerlessness that is so often felt by women or couples when faced with such a monumental decision. There can be very little that can be considered positive at first glance when an abnormality is suspected or diagnosed.

The counsellor’s ability to take some initiative without exacerbating feelings of helplessness and disorganisation is paramount. Whilst this aspect of the counselling may be perceived as very supportive initially, it must be viewed as a temporary measure for reducing anxiety and putting control back into the hands of the client.

A counsellor’s calm, accepting and reassuring manner develops security and comfort, facilitating the expression of all feelings and impulses that may be associated with the client’s crisis. The client, although vulnerable, feels respected. She does not have to feel strong and capable under the circumstances. Being given permission to express her thoughts and feelings not only reduces her anxiety but empowers her to consider a wider range of options, preventing her from immediately resorting to a situation that later she may regret.

When confronted with an unfavourable diagnosis, disbelief, shock and anger are characteristic reactions. Hopes are dashed, plans are abruptly disrupted and in their place is the burden of the decision to continue the pregnancy or to terminate it. An understanding of the specific defect in the foetus is a significant factor in determining the outcome (Blumberg, 1984). This is important not only in coming to terms with an abortion decision but also assists significantly in preparing to continue the pregnancy.

It is important that the client does not think that termination is her only option and that she is encouraged to consider the benefits of a natural outcome of her pregnancy. Encourage her to draw on all her internal and external resources – her spirituality and her support systems. For many, the suggestion to terminate implies: “You won’t be able to cope” which may further erode the client’s self esteem.

Case example:

“Fay” was told at 23 weeks that her baby had a serious heart defect which was not compatible with life. Abortion was recommended rather than she, her husband and 2 year old son have to deal with the trauma that inevitably lay ahead. After agonising over all opinions and options, Fay and her husband sought prayer and support through their Church community who immediately rallied behind them, assisting them in many practical ways during their decision making time and again after the delivery of their second son “Michael”.

Michael lived 36 hours. Because it had been thoroughly discussed and prearranged with medical and nursing staff, the family was able to spend the whole time with their baby tending to him, changing him, holding him, forming a relationship and creating their own special memories which they later felt assisted them in their grieving.

A funeral service acknowledged Michael in a way that was very important to this couple. His birth, his short life and what they had shared with him, whilst painful, gave them comfort. He was their son.

Factors associated with decision making

Suggestions to follow up in the process of decision making:

The Emotional Impact:

Facilitate expression of the shock, anger, disbelief and confusion that so naturally follows news of an abnormality. Consider and explore all the likely scenarios. Be a sounding board for your client to consider her thoughts and feelings both short and long term.

The Diagnosis:

Check out the reality of the tests. Ask for further testing – a decision to terminate should not be made on one test only, especially a screening test. Seek a second opinion to consolidate the diagnosis – some problems have been known to resolve. Some congenital malformations may be surgically corrected, some prior to delivery.

Information:

This applies not only to medical information but also to the possible emotional and spiritual impact the decision making will have. Support groups pertinent to the particular disorder may be of assistance. Talk to others faced with this dilemma. Write down questions and chase up answers.

Moral Issues:

Explore how the client had previously felt about abortion. What are her views now that she is confronted with her dilemma? Help her explore her faith and values.

Pressures:

Whilst the client may want to discuss her situation with others including family, friends, professionals, clergy or others who may have been in the same situation, it is important that she understand that this is a decision that only she and her partner can make.

Time:

Wherever possible she needs to take time to absorb all information. Consider not only the facts but encourage her to listen to her intuition and feelings. Encourage her to take time out from ordinary activities if at all possible.

Abortion:

Discuss the procedure, all that it entails and the possible side effects – physical and emotional. The stage of the baby’s development provides an awareness and focus for her grieving process. Explore how she thinks she will cope with an abortion. Watch for discrepancies in her responses, bringing these to her attention.

Continuing:

Investigate all likely outcomes, the degree of impairment and what that may mean as far as indicated treatment and the possible life expectancy of the baby. The parents need to discuss with their obstetrician, paediatrician and hospital staff what their wishes are as far as treatment measures are concerned and also any other special procedures they wish to put in place. For example, if the baby is unlikely to live for very long the parents may wish to totally care for the child with minimal involvement from hospital staff. They may even wish to plan a funeral for the child so that any details that may be especially meaningful for them may be thought out and sensitively set in place by supporters. I believe it is very important for parents to feel that they can make choices that ultimately will prove to be positive ones for them.

Post abortion counselling for foetal abnormality.

With technological advances increasing parents’ awareness of the foetus as a separate entity, it is not surprising to find the loss of a planned pregnancy experienced as the loss of a child. Indeed, the maternal grief response is evident in many women who miscarry an unplanned pregnancy or one about which they may have been ambivalent. Women who “choose” to abort can often be distressed and confused about the ensuing feelings of emptiness, sadness, depression or guilt. This is especially so when there has been uncertainty or pressures associated with the decision to terminate, such as a diagnosed abnormality. The various social and psychiatric pressures seem to conflict with the normal biological drive towards motherhood.

The assumption is often made that the longer the pregnancy the greater the bond with the foetus and, subsequently, the greater the sense of bereavement. However, care must be taken not to minimise the loss but rather assess it on an individual basis. Important factors to consider in making the assessment are:

“the significance of the pregnancy to the parents, their previous experience of loss and adaptation to it, their personalities, and their perception of social support” (White-van Mourik, 1994 p115).

Pregnancy loss is an emotionally traumatic experience and one which brings with it a deep sense of loss. The loss itself may take a number of forms – not only the actual physical loss of the child but also the shattered dreams and the blow to one’s self esteem.

A number of authors, as quoted in White-van Mourik (1994), report far more negative reactions in women terminating a pregnancy for a foetal abnormality than for psychological reasons. Usually the pregnancy was planned and the loss of the wanted child through termination was therefore experienced as a loss of control on a number of fronts – biological, social and moral. The conflict produced by the reality of the imperfect child erodes one’s self esteem. It often takes time and very thorough exploration of the impairment to reconcile the image of the hoped-for baby and the baby with the disability. There may be a great sense of failure as a successful reproductive human being and as a partner.

All too often involved in the termination decision there may be a nagging question of “what if?”. What if the diagnosis is not correct or not as bad as first thought? It is essential that all test results including the post delivery findings be thoroughly discussed with the woman/couple.

Case example:

After delivery of her 17 week foetus who had been diagnosed as having a variety of significant abnormalities, “Toni” was devastated to find that her son’s only visible problem was shortening of his lower legs. Her guilt was so great that she was profoundly affected.

She isolated herself, becoming extremely paranoid, terrified that people would find out that she had terminated her pregnancy. She told friends and relatives that she had miscarried. She berated herself for not seeking a second opinion and for rushing into an abortion decision in an attempt to counteract her sense of failure in producing a child who was not “perfect”. She had rationalised a quick abortion as a means to distance herself emotionally from her child.

Guilt was a significant feature of “Toni’s” grieving process and affected her profoundly. Unfortunately, she dropped out of counselling before she had been able to work through her grief.

The normal emotional reactions of grieving – numbness, denial, anger, hostility and self-blame are usually evident and need to be expressed and thoroughly explored. The woman needs to be reassured that what she is experiencing is normal and that she will have her own unique way of dealing with her grief, and in her own time.

The loss, whether it be a termination of a defective pregnancy or the loss of an anticipated healthy baby after the delivery of an “imperfect” one, needs to be fully dealt with before another pregnancy is attempted. The mother needs to experience the depth of her bond with the lost child before she can start to let go of the attachment (Nichol, 1989). Where a subsequent pregnancy intrudes on the grieving process of a previous lost one, mourning is thought to be suspended until the current pregnancy is over. The chance of postpartum depression in the mother is increased (Blugrass, 1984). It is possible that the state of psychological anticipation in the future pregnancy is not compatible with the normal regret and sadness involved in dealing with the loss of the past.

Attention needs to be given to the implications of the outcome of the affected pregnancy on future ones. Indeed, one would expect that each subsequent pregnancy could reawaken the memories and emotions associated with this traumatic experience. Also dates such as anniversaries of the diagnosis, the expected date of the baby’s birth and the date of the baby’s death or the abortion are significant stimuli to a fresh grief response.

It is important to be aware of any tendency to deny or suppress grief. This may be identified in the client who appears to “get over” her loss too quickly, is too philosophical or displays incongruent emotions (defence gaiety). Unless this loss with all its issues, details, emotions and difficulties is adequately worked through, chronic or complicated grief may result.

As I mentioned before, the blow to one’s self esteem is considerable in dealing with a foetal abnormality. This may raise the question of the parents’ worth. To be involved in the decision to end the life of one’s child is an agonising one – one that may bring with it a great deal of anger and guilt, an enormous sense of emptiness and sadness and also confusion. These need time to be worked through sensitively and without the counsellor’s own biases or emotions foreclosing on the client’s grieving process.

Traditionally father has been expected to be “strong”. This may lead to a suppression of the male’s grief and tendency not to identify his needs. His pain may be displaced into other symptomatology. Somatic complaints may manifest and, as a study by Blugrass (Blugrass, 1982) showed, the alcohol consumption level of bereaved fathers escalated considerably. Normal feelings of guilt and anger may be projected out on to the partner in an attempt to work through the grieving process. So often a couple’s thoughts, perceptions and feelings will differ, distorting communication and creating distance in the relationship.

Couples need to know that these feelings may occur and be encouraged to explore these with each other or with the help of a professional. Both may benefit from a number of separate sessions in order to not only promote verbalisation of their own feelings but to develop understanding of the other. This often opens up communication between partners.

Naming the baby, baptising it and giving it a proper funeral service all promote the healthy expression of grief. If this was not done for some reason, it may be therapeutic for your client to attend a service such as is run by Open Doors for those who have suffered a pregnancy loss. The Remembrance Service focuses on the lost child, giving the participant the opportunity to name their child and symbolically lay him/her to rest. The service is structured around a number of elements in which the parents may participate if they wish to do so.

Conclusion

The diagnosis of a foetal abnormality brings with it the ensuing anguish of making a decision either to preserve the life of the child despite its “imperfections” or to abort the pregnancy. This decision requires careful assessment of all the relevant information, evaluating the pertinent risks and associated burdens in the face of physical, emotional, moral and religious factors.

The counsellor is faced with the challenging task of working with a woman who is not only in crisis but also grieving. There is grief to be worked through irrespective of the decision, as the pregnancy experience has been totally changed and much readjustment must take place.

The grieving process is usually a very convoluted one with no exact or constant path. Rather, it consists of peaks and troughs, jagged edges, periods of going round in circles, even moving backwards and, at times, feeling “stuck”. It is a very individual path to acceptance and a diminishing of the pain.

However we need to remember that grieving is a natural and healthy process in response to psychological injury (Antley et al, 1984) or, as Granger Westberg tells us, “grieving is as natural to every person as breathing”.

Part of the function of counselling is indeed walking the client’s path with her for a time and, in this case, assisting her to deal with a very complex and painful issue. However, in working in this and, indeed, in any area of grief, the counsellor must recognise that the work primarily belongs to the client – the pain is hers. In time the pain will diminish, however, the place of the lost one is never filled. The sadness, which is intrinsically tied to the value invested in the experience, will not be completely eradicated.

In closing, I would like to quote the words of Freud written in a letter after a bereavement in 1929:

“Although we know that after such a loss the acute state of mourning will subside, we also know we remain inconsolable and will never find a substitute. No matter what may fill the gap, even if it were filled completely, it nevertheless remains something else. And actually this is how it should be. It is the only way of perpetuating that love which we do not want to relinquish”.

Baby Alice went to term and was born by Caesarean section after some hours of labour. Her parents delighted in her safe arrival and celebrated with their family and close friends who had prayed with Jennifer and Stephen since before Alice’s conception that they would be blessed with a child. In the midst of this loving circle, Alice died a few hours later.

The day of her funeral was cold, but the sun shone. In the end, said the minister, it is not what you have done with your life but who you have been, how much love you have generated and the difference you have made in the lives of others. Alice’s brief life, he said, had been a blessing. She had drawn people together in prayer. She had strengthened their faith. She had increased their understanding of love, life, priorities, relationships, grief and endurance. For these and many other reasons known only to her parents, both Alice’s life and death had unique meaning.

References

Antley, Ray M., Bringle, Robert G. and Kinney, Keith L, (1984). Down’s Syndrome.
Psychological Aspects of Genetic Counselling. Ed. Alan, E.H., Emery, Ian Pullen. Academic Press Inc. London 1984.
Blugrass, Kerry, (1984). Early Infant Loss and Multiple Congenital Abnormalities. Psychological Aspects of Genetic Counselling. Ed. Alan, E.H., Emery, Ian Pullen. Academic Press Inc. London 1984.
Blumberg, Bruce, (1984). The Emotional Implications of Prenatal Diagnosis. Psychological Aspects of Genetic Counselling. Ed. Alan, E.H., Emery, Ian Pullen. Academic Press Inc. London 1984.
Freud. S., Letter to Binswanger In: Letters of Sigmund Freud. Ed: E.L. Freud. Hogarth, London 1961.
Lumley, J., (1994) Uncertainty and Ultrasound Diagnosis. Ethical Issues in Prenatal Diagnosis and the Termination of Pregnancy. August. 1994.
Nichol, M., (1989) Loss of a Baby. Understanding Maternal Grief. Bantam Books, Sydney. 1989.
Sainsbury, M.J. (1988) Sainsbury’s Key to Psychiatry. Social Science Press Australia 4th 22Ed. 1988.
Sherokee, Ilse, (1993) Precious Lives Painful Choices. A prenatal decision-making guide Wintergreen Press. USA. 1993.

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