You've got to accentuate the positive

Every woman takes a calculated risk when she decides to have a child - especially if she is HIV positive. Emma Brooker met one woman who has braved the odds

Emma Brooker
Thursday 06 June 1996 23:02 BST

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Louise Thomas

Louise Thomas


When Janet learnt that she was HIV positive at the age of 31, her first thought was, "I won't be able to have children." It's probably the first thought any childless young woman would have faced with similar news. "It was a mixture of disappointment and relief," she recalls now. "I'd never been able to make up my mind, so once the diagnosis came I thought, that's it, the decision's made for me - no children."

But eight years since her initial diagnosis Janet, a former infant school teacher who now works part-time, has a different story to tell. Today, she is a picture of vibrant good health and the proud mother of a beautiful strapping two-year-old called Michael. Needless to say, she still has the virus, but she describes herself as one of a growing group of "non- progressors" - people who are living healthy, normal lives 10 to 15 years after contracting HIV.

Janet's decision to go ahead and have a child is indicative of a "sea- change" among women with the virus, of whom there are now about 4,000 in Britain, says Stephanie Elsy, director of the charity Positively Women.

"Once people get used to living with HIV and they see other people around them with it living longer and longer, they realise it is possible to have a child. Then they start thinking, 'Well, I'd better get on with it'."

But while women with the virus are realising that having children is not out of the question, the subject of HIV and motherhood is still fraught with controversy, as Professor Robert Winston, head of Hammersmith hospital's IVF unit recently discovered. His decision to give fertility treatment to a woman with the virus - who stands a 5-12 per cent chance of passing HIV on to her child - met with a storm of criticism. The British Medical Association said it could not support Professor Winston's move and viewed the case with concern because of the risk that the child would be orphaned.

Although Janet conceived without fertility treatment, she did inseminate herself so as not to put her husband, James, at risk. She caught HIV through having unprotected sex eight years ago with a man who knew he had the virus, and "should have known better", Janet says.

She talks about the way in which she was infected without a trace of bitterness. "I met this man and fell in love. I didn't use condoms, partly because of the magic; he had this charisma." She later found out that he had infected at least two other women before he died.

Janet met James at her former lover's funeral and the couple went on to marry. James knew about her HIV status, but was free of the virus himself. "After two years, he kept saying, 'We ought to have a child', and his family kept asking, 'When's the baby coming?' We went for counselling about how to get pregnant and what the risks were. Nobody told me not to do it, they just said, these are the facts, you decide and we'll support you all the way. I was 36 by then and a lot of my friends were having kids and were having a good time. Finally, I decided, let's do it."

The couple's initial elation at conceiving was shadowed by uncertainties about the health of their developing child. "The chances of the baby being born with the virus were one in seven. That's what they told me, and while I wished and prayed that he or she wouldn't be positive, I also thought that if the baby is positive, let's hope that it's a healthy positive like me. I had heard of children who were born positive and had lived to 15, so I was aware that even with the virus, there was a chance the baby could live 15 years."

Janet describes herself as a "blind optimist" and attributes her continuing good health partly to her irrepressibly positive outlook. While pregnant, she did, however, force herself to consider the worst.

"I thought that if the baby was really ill and the virus progressed fast, I would not want to use medication and would prefer that it died early." Once Michael was born, she still had to wait until he was five months old before she knew whether he had the virus or not. But by that time, "I was quite blase" she says, "because I already had it so set in my mind that he was healthy." She was right.

Michael is now a toddler. Tall for his age, bouncy and smiley, he is full of questions as his mother sits talking at the kitchen table of their big Victorian home while he plays with a big wooden train set at her feet. Janet's most immediately striking quality is her air of incredible calm, a kind of serenity, which she says has come to her through having the virus.

"That's what having the virus has done for me. It has brought everything into focus and made me realise what's important. I step back and enjoy things. Make the most of what I've got. Being a mother gives me so much joy. Sometimes I look at him and I'm overwhelmed by the love I feel for him, by the preciousness of it all."

Janet didn't pass HIV on to Michael, but the prospect of her own early death from Aids remains. "I think about the day when I'll have to explain about the virus to my son. I'll just have to be very open. We have talked about death a lot even though he's only two, because our neighbour died and a friend of mine died of Aids last summer."

Janet separated from her husband during her pregnancy and while James is still in touch, he doesn't spend much time with his son and wouldn't take on full-time care of him. Janet has made other arrangements. "I have asked a certain friend if she would take on the care of him when I die because I know she would continue to bring him up in exactly that I am."

In a way, Janet is preparing to leave her son, just as she is getting to know him, but she has no regrets whatsoever about her decision to become a mother. "Since having Michael, I've met women with HIV who have had abortions because they were told they shouldn't have a child. When they've seen me with my son, they've felt awful."

She is angered by some of the disapproval she has come up against. "I think women with HIV should be treated the same as everyone else. No mother considering having a child knows what her future is. She could get cancer and die, she could get knocked over by a car. None of us knows." Janet points out that people with hereditary conditions they could pass on still have families, as do older women at risk of having a child with Down's syndrome.

Professor Winston's argument is essentially the same. Women with HIV should not be treated differently. "No other free member of society is vetted before he or she decides that they want to try for a baby," he said in defence of his decision.

Much of the criticism of Professor Winston dwelt on the fact that his patient was a former heroin addict and that having the virus was her "fault".

"It is a hugely controversial area because of the stigma still attached to HIV," says Ms Elsy. "If you were talking about a different illness, people would be much more sympathetic and supportive."

A few days after the Winston story broke, another hospital, the Chelsea and Westminster, was reported to be giving fertility treatment to a woman with HIV, but this time, the tone of moral outrage had disappeared from the news reports. The woman being treated was a health worker who had contracted the virus from a patient - a blameless "victim" of HIV. The underlying message was that she, unlike Winston's patient, deserved to have a child.

"Janet" asked for the names in her story to be changed.

The winning story of the Story of the Year 4 competition will be published in the Independent Saturday magazine tomorrow. The competition, a joint venture between the Independent and Scholastic Children's Books, attracted 2,500 entries. The winner gets pounds 2,000 and two runners up get pounds 500 each. An anthology of the best stories entered will be published by Scholastic this autumn.

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