Dominic Lawson: The cruelty of a life and death choice

The vast majority of obstetricians are genuinely of the view that people with Down's have a negative value
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The Independent Online

I would like to think that our experience was unusual, but over the past decade we have met a large number of other parents who have given birth to children with Down's Syndrome and who have been infuriated by the insensitivity of specialists at what is inevitably a traumatic time. "Didn't you have the tests?" is the standard, insulting, question. And no wonder: the scan for foetal abnormalities is increasingly pressed on mothers-to-be, and those who refuse are often treated as if they themselves were aberrant human beings.

Two days ago The Sunday Telegraph reported the story of Lisa Green, who, 35 weeks into her pregnancy, was told that her baby had Down's Syndrome. Her obstetrician recommended that she abort the viable baby. Mr and Mrs Green refused, and they now have "a healthy and happy little boy" called Harrison. Mrs Green told the paper: "The doctor urged us to think how having a baby with 'mental retardation' would affect our lives. He listed only the potential negatives about Down's, without giving us any information to read for a more balanced view. The mid-wife tried to interject and offer us some leaflets, but he talked her down."

The conventional pro-choice retort to Mrs Green's outrage would, I suspect, be to say that she exercised her choice not to abort, that other women might choose differently - end of story. But it's not quite the end of the story. As Lisa Green can attest, what is happening across the so-called civilised world is that mostly male doctors are pressuring women at their most vulnerable into taking a decision which conforms to the prejudices of the medical establishment rather than to the vital maternal instinct called unconditional love.

Finally, a book has been written which puts this issue into its proper context. It is called Defiant Birth - Women Who Resist Medical Eugenics, and has just been released by Spinifex, the Australian feminist publishing house. It consists of a series of personal accounts by women in Australia, the US and Britain of how they had overcome sustained and sometimes openly hostile pressure from doctors to be allowed to give birth to children with disabilities - or even imagined disabilities.

One of the more shocking accounts is by Karen Robinson, who, 19 weeks into pregnancy, was told by her obstetrician that her scans revealed that one of her twins had spina bifida and no skull, while the other was missing vital organs: "He said the babies had to be aborted because they were so deformed there was no hope of them surviving."

Let's pass on the absence of logic in that position (why should it be essential to terminate surgically a pregnancy which would terminate naturally?); Karen Robinson's twins were born some months later without any of the abnormalities claimed to be obvious from the scans. And if you think that is mere happenstance, consider this: in a 2000 study of 300 foetal autopsies only 39 per cent "confirmed the pre-natal hypothesis". This, along with many other facts some people would rather women didn't know, is revealed in the introduction to Defiant Birth by its editor, Melinda Tankard Reist, the founding director of Women's Forum Australia; and as she observes: "One wonders if the women whose babies were autopsied were told the results."

In Britain it was the passing of the Human Fertilisation and Embryology Act in 1990 which permitted the abortion of embryos up until 40 weeks - as opposed to the normal limit of 24 weeks - if there was "a substantial risk of a serious handicap". Not the least appalling aspect of this loosely worded legislation was that the Conservative government of the day imposed a two-line whip on the vote.

Never before had a measure involving abortion been subject to the Party Whip. Baroness (Mary) Warnock, the intellectual architect of the Act, told legislators that by "serious handicap" "we are talking about a child who is very severely damaged and cannot lead a meaningful life". Well, Mary Warnock may consider that people with Down's cannot lead a meaningful life, but that is not the view of the people concerned and nor is it the view of their parents.

Unfortunately, the vast majority of obstetricians are genuinely of the view that people with Down's Syndrome have a negative value: literally so, because these doctors argue that the expense of the scanning programme can be justified by the NHS as it "avoids" the costs to the state of supporting children with Down's. We did not "have the scans" when my wife was pregnant with Domenica, but I recall that even the specialists told us after she was born that "she may well never be able to walk or talk". At the age of 10 she is a very fluent reader, does not let her parents interrupt her when she is talking, and is a very flexible gymnast.

But the real point is that Domenica is not exceptional for a child with Down's: obstetricians, whose job ends when the baby comes out of the womb, are startlingly ignorant of the true potential of children with Down's Syndrome. Confronted with an utterly bleak prognosis, no wonder 90 per cent of British mothers-to-be decide to abort babies diagnosed with Down's. If they were advised by people who actually knew what they were talking about, a different outcome could be predicted. As Melinda Tankard Reist points out: "Of the 55 couples who contacted the Down's Syndrome Adoption Exchange in the US in 1990 after prenatal diagnosis only two decided to place their child for adoption and none opted for abortion."

Over the past decade I have often wondered just why obstetricians have such a horror of bringing a person with Down's into the world. After all, many of these men perform surgical miracles in the womb to save the lives of sick children. Perhaps the reason lies there: Down's can't be cured. There is nothing that the medical profession can do to reverse it: the condition is created at the moment of meiosis - the first seconds of the embryo's existence.

But the other reason why Down's can't be "cured" is that it is not a disease or an illness or, as some members of the public still appear to believe, an infection. There is nothing to be cured - save the fear and hostility of the medical profession and the misery that causes to countless women who are cruelly confronted with a life or death choice.

d.lawson@independent.co.uk

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