HEALTH ALL THEY NEED IS A BABY OF THEIR OWN

Each year in Britain, 20,000 infertile or sub-fertile couples go through the costly and emotionally punishing business of assisted conception . Some return time and again despite the agony. Why do they do it? The simple answer is that they want a child, ...
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The Independent Culture
ANN GOUGH has postponed her fifth attempt at in-vitro fertilisation. She cannot bring herself to go through the procedure again at present - not because of the expense, though that is mounting up (she has spent more than £4,000 so far), or the pain and discomfort, though that is bad enough. The main reason is that she is terrified of yet another failure.

When Ann and her husband, Kevin, first embarked on the roller-coaster of infertility treatment, they decided that they would have five tries at IVF, and then put it behind them. Now, faced with the reality that this bid is going to be her last, Ann - a 33-year-old civil servant living in Coventry - cannot pluck up the courage to go through with it.

Ann and Kevin belong to the luckless two million people in this country who are infertile or sub-fertile. Against a general lack of sympathy, they often have to fight for NHS treatment or pay thousands of pounds for therapy which can produce yet more heartache.

"At the beginning," says Ann, "there seemed to be so many options: tubal surgery, IVF, adoption. We have been accepted for adoption, but there are no babies available, only older children. And we really want a baby."

Everything is against people like them, she explains. "You have to pay for your treatment; you have to beg your GP for the drugs. I have had trouble with my employers. They say that to give women time off for IVF treatment discriminates against men."

As with many other women who undergo assisted conception, Ann has had to come back many times. In fact, her four tries and her one attempt at frozen embryo transfer are few compared to what many would-be parents go through. Bourn Hall in Cambridgeshire, whose founding team of Steptoe and Edwards produced the first test-tube baby in 1978, had one patient who made 15 attempts, while the Hammersmith Hospital in London has seen one patient who has tried 22 times.

"She had two tries here and conceived on her second, but it was her 22nd attempt in total," says Robert Winston, Hammersmith's professor of fertility studies and one of the best-known pioneers of assisted conception.

These couples are what infertility counsellor Sue Jennings calls the "IVF groupies", who find it impossible to give up treatment despite repeated failure. What is it that makes some women go back time and again, though the treatment is physically and emotionally draining and their chances of success are slim?

In many ways, the answer is straightforward: they want to have a baby, just like the 600,000 fertile couples who achieve this goal every year. Having children is something most couples take for granted. "Our family and friends with children seem to be members of a club we can't join," says Ann. "We feel excluded from it. "

Omar, a 35-year-old computer analyst, and Sophie, a 30-year-old radiographer (not their real names), who are of Ugandan Asian origin, are being treated at the Midland Fertility Services clinic in Aldridge, north of Birmingham. "To us, having a family is very, very important," says Sophie, "and it has become more so since we discovered that we may not be able to. As time goes on, it hurts more than anything else. I cannot bear to see women coming to my hospital wanting terminations, women for whom pregnancy is a burden."

Omar and Sophie have a semi-detached house on a new estate, which they chose specially because it was near good schools, and not in a rough neighbourhood unsuitable for children. "I feel we could offer a child so much," says Sophie. "Omar loves children and can spend hours with them. He has seven nephews and nieces. When they come round, the house feels completely different."

Couples with this overwhelming desire to have children cannot help thinking that if only they have one more try, the longed-for child will arrive. "It becomes something that takes over people's lives," says Sue Jennings, an independent counsellor and trainer who was responsible for setting up the counselling service at the Royal London Hospital in 1987. "Once they have had several goes, they cannot help thinking that maybe next time it will be them.

"Some women whose bodies will not produce a baby punish themselves for it," she adds. "I used to see one woman who beat herself up every time she had a period. She would pummel her stomach until it was black and blue."

Sally Holland, a 36-year-old former nursery nurse who set up a self-help group for infertile couples, agrees that there is often the feeling that with just one more try, they will get there. She was lucky. She conceived on her third attempt, which was at the Walsgrave Hospital, Coventry. The Walsgrave's service is relatively cheap, but her first attempt was at a private clinic and cost her £2,500.

"It takes over your whole life," she says. "You get a negative pregnancy result and it is the pits for a few days. But then you start to get over it and decide that you will try again. Sometimes couples are starting to come to terms with their infertility and they hear about some new procedure, and it stirs it all up again."

Some couples keep coming back for treatment because they have been misdiagnosed in the first place. Charlotte, 33, and her husband, Ben (not their real names), who both work in banks in Edinburgh, went through IVF three times before Charlotte conceived naturally.

"I feel very angry that the first consultant we saw did not carry out all the tests," she says. "He said I had unexplained infertility. We kept going backwards and forwards for about two years, until finally he said I needed IVF treatment and that I would have to go privately. He just wanted to get us off his books."

Charlotte had two attempts at IVF, then went to a private hospital for further investigations. There, doctors discovered that she had a retroverted and bicornuate uterus [a womb with two horn-like projections]. She had an operation to correct this on the NHS, then had one more attempt at IVF, which also failed. Two months later, she got pregnant by normal means.

"Altogether, we spent between £6,000 and £7,000," says Charlotte. "It's not the money I resent most, but going through the entire procedure when I didn't really need to. Physically, the whole business is very, very demanding."

Women like Charlotte start off by having a nasal spray (the drug Buserelin) which closes down their hormonal system. They go through a mini-menopause, with hot flushes and so on. Then they start a course of another drug (usually Pergonal), which they have to have injected into their behind. "This is to make you produce lots of eggs," says Charlotte, "and the injections are very painful. You also have to have blood tests every day to measure your hormone levels. Finally they give you more drugs to make the eggs ripen, and then you go into hospital to have them removed."

At this point, the patient's partner is asked to produce a semen specimen, which is treated and put with her eggs. Two days later, the woman has to go back into hospital to have the fertilised eggs replaced.

"It knocks your system for six," says Charlotte. "You feel dreadful. It's hard for husbands, too, because they feel abandoned. You wait for two weeks, desperately hoping you are pregnant. You are told to carry on as normal but you are scared to do anything. I didn't dare take so much as a jar of coffee out of the cupboard. Then your period comes. It is devastating."

Vivian (not her real name), a 46-year-old lecturer from north London, went through five attempts at IVF and two at artificial insemination at a total cost of around £l5,000. She had to make the agonising decision of whether to go on having treatment, or call it a day.

For IVF treatment as a whole, the chance of having a baby at the end of it - what is called the "take-home baby rate" - is 13 per cent. But it varies according to age and the cause of infertility. The take-home baby rate for all these women declines steadily from 17 per cent (almost one in five) for those aged 25-29, to 1.7 per cent (fewer than one in 50) for over 45s.

Where the cause of infertility is a low sperm count or poor-quality sperm, the chance of conceiving is as low as 8.4 per cent. If donated sperm is used, it improves to 17 per cent. Similarly, if a woman uses donated eggs, either because she is not producing eggs or her eggs are of poor quality, the success rate improves. In their late thirties, such women have a one in four chance of having a baby, and those over 40 a one in eight chance.

Vivian's story shows how hard it is to come to terms with childlessness. "I am one of the great unknowns - one of those people with unexplained infertility. Tom and I started trying for a child in about 1986 and started IVF treatment in 1991, when I was already 43. I did become pregnant with IVF the second and fourth time. I tested positive on the fifth attempt but I was no longer pregnant a couple of days later."

Doctors do not know whyVivian is unable to stay pregnant. "It was very frustrating, not only for me but for Tom," she says. "I got a lot of sympathy from people I told; my boss was wonderful. Nobody supported Tom. The drugs aren't the worst part; they're nowhere near as bad as the two-week hiatus after the doctors have put back the embryos. You pray like crazy and dare not move. I stayed in bed for two weeks. You concentrate on nothing else.

"When my period came, I'd cry myself stupid. I didn't think it was right to phone Tom at work, so I'd wait until he came home to tell him. I'd sit on my own for hours, trying to deal with it. The longest time I was pregnant was four months. When I lost it, Tom and I went down to the summer house with a bottle of champagne, shut the door and bawled and screamed."

They gave up having treatment last year, because they were "completely and utterly emotionally exhausted, and could not take any more". Vivian and Tom, who is an architect, have now decided to adopt. They have been offered two sisters, aged five and eight, by a London borough and will be assessed for their suitability over the next six to nine months.

Someone who thinks it is entirely normal to want to return three or four times for assisted conception treatment is John Dickson, director of ISSUE, the National Fertility Association.

"The main reason for coming back several times is that the effect is cumulative," he says. "People should not have unrealistic expectations of IVF. After all, with normal intercourse there is only a 20 per cent chance of being pregnant each time. At a good clinic, the success rate for assisted conception with IVF is similar to that of having sex. So it is not unreasonable to expect to have to make several attempts."

Cases vary, however. If a woman is over 40, or there is a problem with her partner's sperm, or the fertilisation rates on previous attempts were low, it might not be worth carrying on. "But if with each treatment she produced lots of eggs, there was a good fertilisation rate but she just didn't happen to get pregnant, that is different."

Mr Dickson believes passionately that the NHS should be more willing to pay for treatment. At present, only about 1,000 couples out of the 20,000 who have assisted conception each year have their treatment paid for by their district health authorities.

"Why is infertility considered to be of only marginal importance in Britain, when it is not considered that way in Europe?" he asks. "In France and Germany, the state pays for four attempts at IVF for infertile couples, while in Belgium and Holland it pays for three. The treatment is not new (it goes back to 1978) and success rates are constantly improving.

"People say nobody dies from infertility, as if that is a reason for the NHS not to pay for it. But the great bulk of health care in this country is not concerned with life-saving procedures, but with improving the quality of people's lives. Infertility can lead to depression, alcoholism, marriage breakdown and even suicide. Couples may not suffer physical pain, but they certainly suffer emotional damage."

Perhaps Plato understood the feelings of the infertile when he wrote: "There is a sense in which nature has not only endowed the human race with a degree of immortality, but has also implanted in us all a longing to achieve it, which we express in every way we can."

! `Infertility Counselling', edited by Sue Emmy Jennings, is published by Blackwell Science at £17.99. ISSUE, the largest infertility self-help group, provides general information, support and counselling. The organisation is based at 509 Aldridge Road, Great Barr, Birmingham B44 8NA (0121 344 4414).

! `Helen's Story', a documentary about fertility treatment, will be broadcast as part of BBC2's Labours of Eve series on Tuesday at 10pm.

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