Such a heartless view of disability

'Such sentiments indicate how much Down's now represents all mental or physical abnormalities, and our fear of them'
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The Independent Online

Amniocentesis has never seemed at all sensible to me, because it is so invasive. It stands to reason that when a big hollow needle is inserted into the womb, and fluid withdrawn through it, there's bound to be some risk. The risk is of miscarriage, quoted as 1-2 per cent ­ depending on whose information you're listening to. So the procedure has always been one that a woman is well advised to think about carefully, although that doesn't stop an astonishing 40,000 expectant mothers from going through with an amniocentesis each year.

But new research, carried out at St Bartholomew's Hospital, puts the risk of miscarriage into a horrible new context. Amniocentesis is carried out primarily to check for the possibility of Down's syndrome. It turns out that while the test diagnoses around 100 Down's cases each year, 400 healthy foetuses are subsequently miscarried as a result of the test.

So statistically, the conclusion can be drawn that around four healthy babies are lost each year in the cause of establishing that one mother is carrying a child with Down's syndrome. That mother, under the Abortion Act, can then decide to terminate her pregnancy if she wishes to. But this research surely suggests that the right to abort a Down's baby is one that, at present at least, carries far too high a price.

Every woman over a certain age who has embarked on a pregnancy is familiar with the general territory. She will be offered a blood test and a numcal scan (which measures the fluid at the back of the neck) to check for chromosomal abnormalities. During my present pregnancy, I was offered a numcal scan, and I told the midwife that I wasn't sure that I wanted it, as I didn't think that the result would change my wish to go ahead with the pregnancy.

She didn't exactly pressurise me, but she did say that the test was worthwhile, and a few days later, my hospital appointment came through. As it happened, the date of the scan made it a little too late for the procedure to be meaningful. I was told that the baby had developed too much for the neck fluid to be accurately measured. Nevertheless, a result was sent to me anyway. According to the non-test, I have a one in 1,100 risk (at term) of Down's, although this does not preclude the possibility of having a Down's baby. The result, in all practical terms, tells me nothing at all.

It does mean, however, that I will not be offered amniocentesis. Out of interest, I asked my midwife if under those circumstances, I could have the "triple test" instead if I was willing to pay for it, as a friend of mine had done recently under the care of a different health authority. The midwife didn't know what I was talking about.

This is fairly surprising, since the triple test is a well-established alternative to amniocentesis, with far fewer risks, as it measures three indicators of Down's using a combination of blood tests and scan results. It has been in use since 1988, and has since been superseded by the quadruple test, which is available through just 9 per cent of health authorities. Obviously, these tests are more expensive than amniocentesis. but as this new research shows, the cost of amniocentesis is so high in terms of human life, that it does not seem worth doing.

And all this comes before considering that the right to abort an "imperfect" child is a highly loaded moral dilemma anyway. But a system that puts so many healthy foetuses at risk just to find out whether some have a chromosomal abnormality, is surely one that can be seen as hysterical, not to say scaremongering, about the perceived lack of value in a Down's life.

This would appear to be confirmed by yesterday's report into cardiac surgery at the Royal Brompton Hospital, which was accused a couple of years ago by a whistle-blower, of discriminating against people with Down's when it came to heart surgery.

Since heart defects are one of the common problems among people with Down's, this was not only a serious allegation but one with implications for many of Britain's 60,000 Down's citizens. The problem received publicity last year when Craig from Big Brother donated his prize money to Joanne Harris, whose family is trying to raise the money for her to have heart surgery in the US. Her plight had previously been investigated in the TV documentary, A Heart For Jo.

The Royal Brompton was given a clean bill of health last year in a report by an independent inquiry. But pressure from concerned parents resulted in another report being commissioned, before the first one had even been published.

This one does not let the hospital off so lightly. While confirming that the quality of surgery given to Down's people is no different to that given to anyone else, the report finds that the attitudes of doctors were such that some parents were given the impression that surgery was not considered worthwhile in Down's cases because of their child's poorer quality of life. A survey by the Down's Syndrome Association at around that time found that 28 per cent of the parents of Down's syndrome children felt that their child had been discriminated against in terms of health care.

This surely isn't surprising, as Down's people can be said to be discriminated against from the time of their conception. Older women, who are at a much higher risk of having Down's children, are tested much more rigorously than young women, whose risk is low. The result is that now, more Down's babies are born to younger women ­ at the rate of two each day, or one in every 1,000.

But what is really worrying about these latest statistics on amniocentesis is that if the idea of having a Down's baby is considered such a tragic one that healthy pregnancies can be sacrificed to root out the "problem" ones, then what does it say about our attitudes to those people who live with an extra 21st chromosome? Even though amniocentesis is pushed so hard as a medical panacea, it has by no means eradicated Down's. It may, though, have contributed to a general impression that there is no real "excuse" for such people to exist.

Certainly, some of our attitudes to people with Down's and other learning difficulties, are pretty draconian. Hysterectomies without consent are legally established for Down's women, although the first application for the vasectomy of a Down's man was rejected last year. At that time, I argued in The Independent that the gender imbalance in this kind of surgery for Down's people was strange, although I later learned that since Down's men usually produce sperm so damaged that they are functionally infertile, the case was quite senseless anyway. Recently, though, it was decided that a 19-year-old Down's woman should undergo a hysterectomy, even though her boyfriend is a Down's man. Why on earth should such a devastating operation be sanctioned under those circumstances? What worth is placed on this young woman's quality of life?

Is it possible that they were summed up by Louis Blom-Cooper QC, when a couple of years ago, while discussing the Bulger case, he announced on Radio 4 that: "In murder you can get the whole range of events. You can get at one end the outrageous serial killing, at the other end you can get the mercy killing, somebody killing their mongol child for example, which arouses the greatest sympathy."

This senior legal figure later apologised for using the term "mongol", saying that it "showed his age". But the real horror is not his terminology, but his sentiments, which surely are an indication of how much Down's has come to be representative of all mental or physical abnormalities, and our fear of them. It is a strange value- system that suggests you can get away with advocating murder, as long as you use the right word to do so. Amniocentesis looks more and more firmly tied into that value system.

d.orr@independent.co.uk

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