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IVF & Ever After

The Emotional Needs of Families

Rockpool Publishing Pty Ltd

The Emotional Impact of Infertility

It was distressing for both of us to be constantly asked, 'Are you pregnant yet?'

One in six Australian couples suffers infertility. Even though we have the technology to work miracles for infertile couples, the emotional consequences cannot be 'shrugged off', nor can couples simply 'get over it', blindly rushing off to a private clinic to pay for expensive fertility treatment. Those who have been diagnosed with fertility problems require good psychological support to explore the complexities of their feelings before IVF treatment can be successfully attempted. Arriving at the door of an infertility clinic without having reflected on the feelings evoked by a diagnosis of infertility can be disastrous.

'No matter what the doctor offered us, the diagnosis of "infertility" was there like a dark cloud hanging over us. I didn't feel science could ever really overcome it. I felt a failure. It was my fault,' one woman explained. She later went on to give birth to a healthy little girl, yet she still labels herself 'infertile'. In common with many other mothers, she has a sense of failure, of needing outside help and sometimes of thinking that the pregnancy and the baby somehow are not truly 'hers'. It is pervasive, damaging and it is a real threat to parents' and children's self -esteem. But it is treatable.

I started working with families with IVF babies in 2002. My counselling practice concentrates on treating families with young children, specialising in helping parents to parent in a more positive way.

At first, when I began working with an IVF family, I downplayed the importance of the manner of conception and treated the family very much in line with the conventional wisdom regarding parents who were experiencing anxiety and difficulty separating from their young child. Although I achieved some success with my normal repertoire of strategies, I found the family's pervasive anxiety about 'something being very wrong' hard to understand. It was only the following year that I came to understand the complexity of the issues IVF raises for prospective parents throughout the treatment process and during parenting. I came to see the tremendous impact IVF can have on the whole family, even extending to grandparents, aunts and uncles.

Treating a family who had not yet set foot inside the door of an IVF clinic startled me. Within weeks, I was questioning how the problems they faced could have arisen without a traumatic event taking place. The family was enormously emotional and irritable, which caused incessant arguments, particularly between mum and dad. There was a lot of anger from unresolved grief over a previous miscarriage. Family functioning was at an all-time low. The family's two children, who had been conceived naturally, were also exhibiting signs of behavioural disturbance. Although I am not suggesting all families are as traumatised as this one was, I have since found that many do exhibit similar symptoms of stress. At times, particularly during the phases when they are coming to terms with infertility, deciding to use IVF and the treatment itself, emotions arise that are simply too much for a couple to handle alone.

Even after this experience, I was not convinced there was any particular 'pattern' of need specific to IVF families. But several months later I began working with another IVF couple and their child. Again I perceived this pervasive fear of loss and the sense of danger that began before the IVF treatment process had commenced, together with the difficulty in separating for both parents and child. I began to sense there was something different about IVF families. I decided that, as a helping professional, I needed greater knowledge about the use of IVF as well as specific therapies to help the family to heal. I undertook research on the subject, finding a few studies that demonstrated heightened anxiety in couples undergoing the procedure. I was unable to find any information directly relating to the situation in Australia.

Recently I completed a small study of my own, a simple analysis of the number of IVF families I was working with as a proportion of my total client base. Surprisingly, in 2005 almost 20 per cent of my clients, twenty of the 100 families then on my books, had used IVF, although this might not have been why the family requested help. In comparison, more than 3 per cent of all births in this country at that time used IVF technology. This research further confirmed my suspicions that there was indeed a pattern of need among IVF families that simply was not being fully recognised and certainly was not being addressed.

The final piece of the puzzle came in the shape of a 2005 study. A research team reviewed the work of parenting centres across Australia, including organisations such as Tresillian, which provide help for parents in settling, feeding and treating post-natal depression. The study found that mothers seeking help at these centres were much more likely to have suffered adverse reproductive issues, such as miscarriage and IVF, than mothers in the general population. Indeed, 6.5 per cent of the mothers attending the centres had used IVF, although they only comprised about 3 per cent of women giving birth. The study included an examination of one case, a couple using IVF to conceive their first child, and the emotional ups and downs that accompanied pregnancy and early parenting.

Other studies were reporting similar findings. Furthermore, Tresillian director of social work and psychology Lisiane LaTouche had also found IVF parents experiencing psychological difficulties. 'There are a significant number of IVF families attending Tresillian centres,' she explains. 'The figures are certainly higher than in 2003/2004 and are rising.' LaTouche reports complex family presentations: for example, older mothers conceiving through IVF and women giving birth to multiple babies.

My own findings were clearly being replicated elsewhere in Australia. This motivated me to put together a treatment plan for helping these families in need, right through from the infertility diagnosis, the IVF process and pregnancy to the parenting experiences. The plan is flexible in order to accommodate the vastly different situations families may find themselves in, but it always starts with recognising the impact a diagnosis of infertility has on a couple.

Conception today

Our modern society leads us to believe a family of our own is always a choice we are able to make. Couples try to conceive a baby, believing it will only be a matter of time before a successful pregnancy is achieved and a healthy child is born. Advances in medical science have given the human race the sense that 'everything can be achieved eventually'.

We are bombarded with this 'we can do anything' philosophy. The media constantly reports stories about increasingly mature mothers giving birth. Many women feel they are more in control of their bodies than ever before and that age is no longer a barrier to having a career and a family. Expectations are artificially raised.

But, with as many as one in six couples experiencing infertility, these expectations may be shattered. This can leave couples feeling isolated, 'different' and eventually like failures. No matter what follows, their self-esteem and psychological well-being suffer sizeable blows.

What I have found from working with IVF families is that these overwhelming feelings from the infertility diagnosis are often left unresolved. IVF clinics offer counselling, but this is focused on the IVF process itself — how to cope with it and what to expect — rather than on the circumstances that brought the couple to the clinics in the first place. Gynaecologists and fertility experts will usually explain the issues around the couple's problems from the medical points of view, but have little knowledge of what the psychological impacts may be. No one sits down with the couple, acknowledges their huge emotional stress and then tells them how to cope.

When IVF begins, the couple are often not mentally adjusted. Psychological work must begin as soon as an infertility diagnosis is made. For parents who have already given birth to an IVF child, this work can take place retrospectively to avoid unresolved grief affecting the parent-child bond.

The grieving process

The first and most common emotional reactions to a diagnosis of infertility are sadness and loss. The couple need to grieve about the fact that the normal vision of conception and parenthood will not be an option for them. This is an important reaction, not to be devalued or brushed aside, but it needs time and energy to accept.

The grief accompanying a diagnosis of infertility is complex. By this I mean that there are a number of different losses that couples must face. The infertility experts Doctors Aniruddha and Anjali Malpani describe these different losses in their book How to Have a Baby: Overcoming Infertility. They include feelings of loss over potential children and their non-ability to pass genes on to the next generation. This puts a great strain on marriages, as couples wrestle with the feelings that life is now meaningless. Couples also experience loss of the experience of natural conception, pregnancy and birth.

Another loss that often goes unrecognised is the loss of privacy — and, indeed, ownership of their body for men and women, both of whom may have been through dozens of invasive tests to reach a diagnosis. Malpani and Malpani explain, with startling clarity, the sheer unnaturalness of the explorations involved, quoting one patient who felt she had donated her body to medical science. Daily temperature charts, blood tests, sperm tests and records of love-making can turn a previously cherished and satisfying aspect of life into one that is to be dreaded. All these feelings eat away at a person's self-esteem. These same feelings may again come to the fore after a pregnancy is achieved and a baby born.

To grieve means to experience deep and lasting sorrow. To grieve effectively does not have to mean shutting yourselves away for months or exploring the pain of infertility for days at a time. Grieving means that you recognise your emotions, that you acknowledge and try to understand them and that you express your sorrow in the way that suits you best.

The pioneer of our modern understanding of grief was a wonderful American woman, Elisabeth Kubler-Ross, whose work still shapes much of the professional help that is available to grieving people. Kubler-Ross described people passing through five stages during grieving; how quickly these stages occur depends very much on the person involved and the nature of the loss. You may also pass through some stages several times during the period of grieving.

Firstly, the loss is met with shock and a feeling of numbness. This is a chemical reaction in the brain designed to protect humans from feelings that are too overwhelming to comprehend. Parents often say they feel they are walking in mist for the first weeks after being told they could not conceive naturally. This is a stage that cannot be rushed and little can be done to 'clear the head'. What helps seems to be time to reflect and make sense of what has happened, the opportunity to talk to friends and family who can provide unconditional love, and the understanding of one partner for another. It is not uncommon for some people to deny the situation initially, rushing to book second or third medical opinions or searching the world for natural 'miracle' cures. Again, time will be the healer that eventually allows both partners to face up to the reality of the situation.

As the numbness wears off, it is usually replaced by anger: at the world for its harshness; at God if religion is a part of life; at a partner for being the one 'responsible' for the infertility, and at parents who have not had to go through this grief. For people not used to sudden anger, this can be a frightening time. This is the stage when sudden flashes of irritability can easily ignite into a full-blown fight for partners struggling to stay together on an emotional level. The anger may also be turned on well-meaning friends and family who offer up clichés as reassurance.

Anger need not be a negative emotion but one designed to help humans cope. If used wisely, anger can be a positive phase of healing. It may drive people to find a solution, to keep going despite disappointments and to avoid turning inwards into depression. The key to dealing with anger is to express it in harmless ways. Anger exercises, such as keeping a daily journal to chronicle your early feelings or writing an angry letter to friends with children or to someone who has hurt you (but not sending it), are invaluable. These are ways to let out all the pain and frustration being felt. It may be helpful to have a ritual letter-burning ceremony once the worst of the anger has passed.

The third phase of grief, according to Kubler-Ross, is bargaining. Bargaining may involve praying: 'If only I could overcome infertility, I would be a better person.' Humans search for some reason that something bad has happened so they can find a way to put it right and, therefore, get rid of the pain. Again, this is a very normal way of dealing with a painful situation and is best helped by partners, friends and family simply listening rather than arguing that bargaining thoughts are not likely to work. This bargaining is just another step the brain takes on the road to making sense of loss.

The fourth stage, perhaps the longest to move through, is that of depression. As reality dawns, so partners experience the full force of their sadness, beginning to recognise that natural conception will never be theirs. Women may find themselves crying at odd times, unable to look at children playing in the street and deliberately avoiding pregnant friends. Men may experience low self-worth, impotence and feelings of the loss of their manhood. All of these feelings will be resolved in time if partners are allowed to cry, express sadness, talk about the dream child they will now not have and receive the support of others.

Finally, if the preceding four stages are navigated successfully, partners will reach Kubler-Ross's final stage of acceptance. This is not necessarily a happy and confident place but one in which partners feel more able to look at their situation realistically, to evaluate other options, such as assisted conception or adoption, or to decide to remain childless and pursue other meaningful goals.

Stuck in the grieving process

Even after the birth of a healthy baby, many IVF couples remain embedded in cycles of anger and depression, at times feeling worthless or feeling intensely and unrealistically angry with a friend who has reported conceiving 'first go'. There may also be difficulties appearing in the relationship because of the different coping styles men and women adopt in the face of great stress.

Most people become stuck in their grieving by avoiding the terrible sadness that acceptance brings or by holding someone else responsible. They may distance themselves from friends who have children, refuse to talk about their diagnosis or seek 'alternative therapies' in the hope of achieving 'miracle' cures. They may blame each other, God or their own continual bad luck.

In contrast, couples who move through their grief are those who face their infertility diagnosis head-on. They discuss their feelings together and with close friends. They acknowledge that infertility is a painful burden to bear at times. Most importantly, couples who successfully navigate infertility and its associated grief are those who can engage in problem-solving. They research the literature about infertility and use the internet to gain a greater understanding of the difficulties they face. They ask questions of the doctors they see. They review the options they may have and assess each one carefully, evaluating the 'pros' and 'cons', including the realistic costs involved. They remain focused on generating ideas, suggestions and new paths to take.

Special circumstances

Grief does not always depend on how bad the loss is, as measured on a fixed scale. Some people may view the loss of natural conception as the worst event to happen in their lives; another couple may be sad but less affected by grief. Both reactions are entirely normal. However, there are certain circumstances for couples suffering infertility that may complicate and prolong grief.

A number of couples requesting my professional assistance have faced the prospect of using IVF as their only means of conceiving a healthy child, not because either is infertile but because one or both parents carry a genetic abnormality, which may be passed on to a naturally conceived child. Genetic abnormalities can include extra genes, deletion of certain parts of a gene or insertion of extra genetic material into a gene. These abnormalities can lead to failure of the embryo to implant, failure to develop normally or to a baby being born with a genetically determined disorder such as cystic fibrosis. These parents have losses to grieve, but often they also experience guilt at being the carrier of a gene that could hurt an unborn child.

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Excerpted from IVF & Ever After by Nichola Bedos. Copyright © 2007 Nichola Bedos. Excerpted by permission of Rockpool Publishing Pty Ltd.
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