Waiting For The Miracle
Thousands of people in Britain are desperate for a child, and that longing can ruin lives and marriages. Infertility is a lottery - but so is access to NHS treatment. This is one couple's story
Sunday 28 June 1998
Only 18 months ago, the sight of a father and child on the street or the television would make my eyes burn with tears. As a couple we avoided old friends who had babies, and as a result, grew apart from them. We didn't talk about it; the words were hard to find, and anyway, no friendship could absorb the pain that would rush out in a tidal wave once the subject was broached and our feelings undammed.
This is not the worst infertility story you will ever read. It is ordinary, really. The process is brutal, whoever you are. It changes minds and bodies for the worse. It can destroy relationships. It can become an obsession, and bankrupt you. A survey published on Monday, at the beginning of National Infertility Awareness Week, showed that of 1,300 men and women who had undergone treatment, more than half had experienced depression, and one in 20 had felt suicidal. Three- quarters of them had been forced to pay for some of their treatment, spending an average of pounds 3,240 per couple (which does not include some expensive drugs). Only one in four had a child as a result.
Rachel is the most naturally maternal woman I know. From very early on in life she was able to put babies and younger children at ease with a smile and a cuddle. As her career in the health service developed, from secretary to senior manager at a world-famous hospital, it was always understood between us that her one great ambition was to have children.
The problem was endometriosis. It was the first entry in what was to become our personal medical glossary, each word leading in its own way to the inescapable, barren truth. To put it simply, the endometrium is the lining of the womb and is supposed to be discharged every month at menstruation. Endometriosis is what happens when bits of this lining become attached to other parts of the body instead, most often the ovaries. The symptoms can include painful periods or intercourse, lethargy, joint pain and depression, but a woman with severe endometriosis can also have no symptoms, while one who complains of great pain can turn out to have only a small amount of disease.
At this stage there was very little mention of infertility. According to a leaflet published by Issue, the national fertility association, which we read much later, up to 40 per cent of infertile women are found to have endometriosis but it may not necessarily be the cause of their problems. Nobody really knows what the link is.
In those early days it was easy to be supportive and promise to face anything together, because one could always secretly dismiss the idea that there was a problem at all. Everything would be all right. That's what we told each other in 1994 when the consultant at Whipps Cross Hospital, about five miles down the road from us in east London, said Rachel had cysts on her ovaries and they would have to be removed using keyhole surgery, a procedure known as a laparoscopy.
She woke up in the ward in March 1995 to find herself numb across the waist, having been cut right open instead. The problem was more widespread than the doctors had hoped. Laid low physically and mentally by this serious turn of events, Rachel was off work for 13 weeks. For half that time she was immobile.
By now the fear that she might not be able to have children, which had been in her mind unaccountably since she was a little girl, was becoming a full-blown dread. As she recovered, we were visited at home by Andy and Rachel, our closest friends, who were very supportive. They were also about to deliver the hammer blow to her heart. As Andy and I sat drinking beer in the garden together, he suddenly went quiet, looked away and said the words that he knew would hurt. "We're pregnant."
They had only just started trying. It wasn't fair. It never is. What can you do? We had already begun to make excuses not to see other friends with babies, but these were our best mates. For days I agonised over how to tell Rachel the news, and then in bed one morning I let it slip. She wept, for ages. She cried a lot in the following days too, but we fought for the friendship. We were at the hospital hours after the birth of Jessie even though neither of us wanted to go, and over the following months we kept seeing them even though one of us would often be suddenly overcome with anger or sadness at the sight of their beautiful golden-haired daughter and invent a reason for leaving early. There were always tears in the car. The fury I felt then was for the pain my wife was suffering. But I was so full of admiration for the way she refused to let it rip her away from any more friends.
In the meantime, things were becoming seriously medical. Rachel had been left alone for six months after the operation to recover and try for a baby naturally, but in the same month that Jessie was born, we returned to see a doctor at Whipps Cross, who prescribed a drug to make sure she was ovulating. When that didn't work another drug was added, three months later, to regulate her cycle. We were back on the treadmill, having sex at certain times on certain days of the month, indulging every old wives' tale from taking her temperature to waving her legs in the air afterwards. Everyone who has ever tried to get pregnant in such a determined way knows the ironies involved: that it is a great passion-killer, and source of friction. In addition, Rachel was suffering the side-effects of the drugs, including weight gain, loss of libido, spots and wild mood-swings. Instead of fighting back-to-back against the world we were closer to indulging in unarmed combat against each other. It was scary, but the worst was yet to come: we had to take on the NHS as well.
In February 1996 we were back at Whipps Cross. Long echoing corridors led through imposing Gothic buildings from the last century, past geriatric wards where the air was still and heavy, and out into the new wings, built for millions of pounds, where there were already scuff marks on the pastel- coloured walls. This time we were due to see the nurse in charge of the artificial insemination programme. My sperm, which had been tested, would be injected into Rachel with a syringe. With the help of drugs we could be sure that it would get to just the right place, at just the right time. Or at least that was the theory.
Kris, the nurse, was lovely. She explained what would happen, and arranged for Rachel to have a scan. We came away reassured. It didn't last. The scan a few weeks later was favourable but there were no appointments for insemination available. She was fully booked this month. We overheard Kris telling a colleague that she would be on sabbatical for a year and there might not be the money to keep the service going during that time.
Not once in the next five months was treatment possible, sometimes because Rachel's cycle was behaving strangely, but more often because the unit was understaffed, overbooked and unable to make appointments for the right time of the month. The unit was a joke. It seemed to do very little good other than enable the hospital to say it was providing a service. There was not enough money available to make the treatment work, so the large amounts that were being spent might just as well have been flushed down the sterilising sink. Our impressions were confirmed that June when we had a routine appointment with a consultant that was to leave us feeling shocked and abused.
The day did not start well. It was sunny outside and hot inside the hospital. As usual we arrived on time for our appointment but had to sit and wait, tense and worried, for more than an hour. We were prepared for that (as anyone who uses the NHS must be) but not for one jaw- droppingly stupid act of insensitivity - someone had arranged for us to wait with the paediatric list. So a dozen fearful, grim-faced infertile women and their partners were made to sit in a stiflingly hot room with toys all over the floor and children running about. None of the staff seemed to think that there might be a problem, even though one person fainted.
Our consultant had arranged for a colleague at his private clinic to deputise. This doctor told us in his smoothest bedside voice that the treatment at Whipps Cross was not what it should be. Since the nurse was away (her "sabbatical" had turned out to be maternity leave), patients were being seen three days a week instead of five, drugs were being administered by mouth instead of by injection which would have been more effective, scans were being arranged haphazardly, the nurse was unable to read them promptly and the insemination programme was also overbooked. The system was breaking down.
That was honest of him. What he was about to say was less commendable. We could carry on if we liked, that was our right, but there wasn't much point given the way Whipps Cross was doing it. More expensive treatments like in vitro fertilisation (IVF) were out of the question in this health region, so if we didn't have any money it might be best to give up the idea of having a child.
Neither of us was used to this kind of blunt speaking in the consulting room. Until now we had seen a different doctor nearly every time, and every one of them had glanced down at the notes then made us go over the story once more, from the beginning. Then they would be as vague as possible, tell us to come back in three months and in the meantime not to worry. This fellow, with his good clothes and well modulated voice, was different.
Having brought us low, he raised a hope. If, he said gently, we did have the funds (and it is worth remembering that the notes told him we were both young professionals), then we might find more effective treatment at a private clinic. Such as his own. The decision, of course, was ours.
Looking back, it was a masterpiece of manipulation. I remember the day very clearly for another reason, though. Afterwards, on our way out of the grounds, the full emotional impact of everything we had been through finally hit me. For months I had been most concerned with caring for Rachel, but had never quite had a personal connection to her pain. Part of me had even believed that it was all exaggerated. Besides, I had to hold it all back to be strong, to look after her. Everything would be all right. Now I knew, deep down, that it would not. The likelihood was that there would be no child, not with this partner. The penny finally dropped, and sliced through my brain. Immobilised by sudden grief, I sat on the floor and wept.
THE MOST famous fertility expert in the world was furious when he heard what that consultant had done. Sitting over tea on the Peers' Terrace at the Houses of Parliament, Lord Winston muttered something rude that I can't tell you about, because that part of our conversation was off the record. I arranged to interview him earlier this summer, when Rachel and I were considering how to tell our story. But when the tape went back on he had some very strong things to say about the state of NHS fertility treatment under the very party that had nominated him for a life peerage.
"One of the problems about not having proper government funding is that it encourages this sort of dishonesty, and moreover it makes otherwise quite honest, vulnerable people less honest and less honourable," he said. "The temptations of actually using the waiting list, using the inadequacy of funding, and exploiting them are considerable."
Private clinics also benefit from what is known as the "babies by postcode" factor: the inequality of NHS funding that means one health authority will have the money to pay for a treatment like IVF, while its immediate neighbour will not. This makes the man they have called the Lord of Fertility very angry. ''This is not in any way appropriate, because the treatment is not funded by local taxation. There is a national taxation budget, therefore there has to be a national standard. I feel very strongly that this is something for which the government has to be answerable. It is a misuse of taxpayers' money."
He would rather see national centres of excellence established than have hospitals offering a service that is so badly underfunded it might as well not exist. "The money would have been much better spent concentrating that service in a clinic that really knew what it was doing, that was properly equipped and properly run. The Government is allowing, by this inequality and by its bizarre funding of infertility, extraordinarily poor practice. And this poor practice is, moreover, being funded from public sources. I think it's scandalous."
It wasn't just a London problem, he said. "This is happening all over the country." But as a working peer, did he know why the problem was not being tackled? "Low priority, essentially, I imagine. Not seen as important. It's causing a lot of distress to a lot of people."
Lord Winston was a lot smaller and scruffier than he looks on television. You may remember his first series, Making Babies, which followed patients from his clinic at Hammersmith Hospital as they tried to conceive. We taped the series, but could never face watching it. His latest, spectacular and expensive series, The Human Body, is just coming to the end of its run on BBC1. His outfit on the day we met consisted of a light grey suit, French blue shirt, navy blue tie with white polka dots, electric blue handkerchief, a red flower in his buttonhole and tan shoes. The hair was more mad professor than smooth presenter.
If we had met two years earlier I would have fallen at his feet and begged him to deliver us from our troubles. Now I wanted to know if he felt a personal responsibility to each couple that came to him. "Yes I do. As a clinic we have a very strong feeling of commitment to individual couples. I think the patients recognise that."
Did it make a difference to the success of the treatment? "It doesn't make a difference to outcome, in terms of pregnancy rate, but it does make a difference to the success of the treatment. When you fail, as you do most of the time, people feel that they've been taken seriously. That's very important: that they've had the best technology sympathetically applied, that no realistic stone has been left unturned. That actually is a big part of the healing process.
"One of the real problems about the health service at the moment is that this could so easily be accomplished, but unfortunately because there's a denial of these basic aspects of health care, people are left with a feeling that their problems are unresolved. What tens of thousands of infertile couples are having to accept is their feeling that: 'This treatment was haphazard, it was illogical, it was with incomplete investigation, it was with bizarre drug treatments, it was done on whim, it was done when I couldn't get information, and I really don't know whether I've actually had good treatment or not.' That's very difficult to live with because you can't resolve it."
Many compare infertility to bereavement. "The problem is that the patient feels on a treadmill. If they don't have definitive advice, they can't get off the treadmill, so they can't begin to mourn. It never ends. It is the most corrosive thing. It is corrosive emotionally, it's corrosive socially, and it's corrosive financially."
Lord Winston reputedly has a short temper. He was patient and understanding as we sat on the terrace, even when the division bell sounded. Most ironically, he was one of the few fertility doctors I've met who didn't seem to see his job as just making babies. "As you've experienced, in any field, there are people who operate with total insensitivity, and then all this is meaningless."
Before scurrying off to vote he offered a vision of hope for the future of fertility treatment on the NHS. "There are going to be some staggering treatments. The private clinics will be looking for custom. Treatment is going to be so much cheaper that they will not actually have a role." Would it be cheap enough to bring treatment back into the NHS on the basis of universal provision? "Absolutely. Currently, IVF involves giving massive doses of hormones to get the ovaries to produce lots of eggs, and then you have very carefully timed egg collection. If instead of that you took a square millimetre of ovarian tissue in a needle-drill biopsy under local anaesthesia, a very quick procedure, that would contain 100 immature eggs. If you then grew those in culture, in a test-tube, in a laboratory, you would have a treatment which involved giving no drugs to the woman. So you cut out the cost of the gonadotrophins, the monitoring, the giving of injections; you cut out the dangers. All you'd need is the husband's sperm to fertilise the eggs, and the woman to come back for a quick embryo transfer, which takes five or 10 minutes. That will be feasible, I would think, within five years."
IT WILL also cut out the danger of slicing your thumb off in the early hours of the morning. Before you've even had a cup of coffee it is very hard to crack open a glass ampoule without drawing blood. Every day for two weeks before Rachel's first shot at IVF she had to be injected with a hormone that would stimulate her ovaries to produce more eggs. This meant breaking open several little tubes of solvent and powder and mixing their contents before filling a syringe and sticking a needle into the upper part of her thigh. Not being diabetics or drug addicts we were squeamish about this, and thought the needle was huge. Rachel was reluctant to do it herself. At the end of the process was one last big injection, given late at night by a nurse, to release the eggs.
We were now patients at a private hospital, which took ultrasound scans four times during the fortnight to make sure everything was OK. This was not one of the private clinics with which the doctor we had seen at Whipps Cross was associated, though we had visited one just to satisfy our curiosity. It sounds pathetic now, but all we wanted at the time was a friendly face, someone who could help us understand what was going on and offer a little hope. We didn't get it there. His colleague was curt to the point of rudeness, and seemed more interested in getting us signed up to the programme than explaining anything. Robert Winston's clinic was on the other side of London, so we tried another private hospital closer to home. Michael Ah- Moye, head of the Fertility Centre at Holly House in Essex, was the first doctor to describe the situation in a way that made sense. When the appointment overran he didn't hustle us out but kept talking. He was also the first one in nearly four years of treatment to mention counselling without having to be asked.
We paid for it financially, of course, but the counselling at Holly House saved our marriage. Rachel says it helped her begin to put things in perspective, working towards the idea that if we never had children it wasn't the end of the world. She didn't feel that, but she could see that it might one day be possible. It helped me understand how the woman I had loved had turned into someone I no longer knew, whose moods were impossible to predict and whose depression would not lift. It helped us understand the exact circumstances that were igniting our bitter rows, so that we could defuse them. Slowly, it helped me express something I felt shame about: that since that day in the sun my secret store of strength had been the thought that if this did not work out I could just walk away and have a baby with someone else. I wasn't going to do that, but just thinking it left me feeling like a shit.
All that was still going on when our first attempt at IVF took place in February last year. Some hospitals apparently have private video rooms in which the man can produce the sperm required; the nurse at Holly House offered a sheaf of pornographic magazines in a battered green folder. I turned it down, and went with Rachel into a side-room. A cleaner was Hoovering just outside the door.
Under general anaesthetic, Rachel had a laparoscopy and 11 eggs were removed. Two of them were mixed with my semen and one put back into each fallopian tube. This treatment is called GIFT. The others were also mixed with sperm and put into a laboratory incubator for use in conventional IVF. We returned to the hospital on Valentine's Day, so that the strongest of those fertilised eggs could be put back into Rachel. Before they did it we saw the embryo under a microscope: five tiny cells, vibrating. The operation did not require general anaesthetic, but I'm told it was pretty undignified, with a long, thin needle inserted as Rachel lay flat on her back with her legs apart, ankles strapped to the table. She had to stay on her back for another two hours.
The following two weeks were the longest of our lives. Rachel went back to work for some of the time, but she rested as much as possible, and never stopped thinking about what might be. Not for the first time, I felt detached. Neither of us really wanted to talk about it at all, and without physical symptoms of my own it was hard to feel a real connection.
I remember so clearly the morning on which she was due to take a pregnancy test, using a home kit. Both of us were up really early. I wouldn't let her do it on her own and then have to come out and tell me, so for 60 seconds we stood together watching a bowl of urine. In that time the only thought going through my mind was, ''How am I going to help her get over this disappointment?" We both knew people who had been having IVF for years, growing more desperate every time it failed and spending tens of thousands of pounds. That was the main reason why we had decided to try it three times only and then admit defeat. It was a case of making sure all the avenues had been exhausted, so that the process of mourning could begin.
"There's a line!" Her voice was wobbly, excited. "Isn't it?"
"I'm not sure." I couldn't believe it. There did seem to be a very thin, very faint line on the tester, indicating pregnancy. "How strong does it have to be?"
"It is, you know. It's a line. Isn't it?" At that moment black was white, the rain fell up, the wind sucked. The world turned upside down.
JAKE was born on 9 November last year. We wanted a natural birth but it turned out difficult, dangerous and medical. Still, he's here. He's yelling at the moment. A sound that tens of thousands of men and women across Britain would sell their souls to hear from a child of their own. !
Captions: 'In vitro' fertilisation: a needle injects the DNA of a sperm into a human egg (held in place by a pipette, left)
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