FIRST-HAND : My baby wasn't `perfect'

Lorraine Boley on the dilemmas of the birth of a handicapped child

I AM A very rare person. I carry a balanced translocation, which means I have a one in 10 chance of producing a child with Down's syndrome. It seems that this rogue chromosome has travelled down the female line in my family and we only got to know of it when my son was born with the syndrome three years ago.

It is highly unlikely that I am the only one in the family who has produced a child with such a condition - not with those odds anyway. My great-grandmother had nine children and I'd be quite happy to bet that a few more didn't quite make it to the cradle. A friend's mother (who also happened to be quite prolific in the breeding stakes) cheerily told me that she used to keep a plastic bag under the bed just in case the baby turned out without a full ticket.

Brutal ways for brutal times, I suppose. But things haven't got any better. The dominant social philosophy is still "perfects" at the front of shop and "seconds" out the back. The medical profession reinforces this with increasingly intense interventionist screening, and there is now a battery of tests designed to exclude all manner of handicap. Down's syndrome is a handicap that has always been in the firing line, and women can now be offered an early blood test to see if the foetus warrants an amniocentesis.

For many women this is a very desirable advance. The fear of having a child with Down's syndrome is akin to a worst nightmare. I know this because people always tell me how marvellous I am at coping, and I can see the relief on their faces that it is me and not them. Strangely enough I feel both bemusement and pity. Even though I say it myself, my son is a very beautiful little boy and a complete joy to be with. I cannot say that for most of the "normal" children I meet.

But fear blinds people to truth and I am no exception. If I had been told early in pregnancy that my son had Down's syndrome he would have been out of the cab. No doubt about it.

So I am very grateful to the woman who gave me the ultrasound. I was enchanted to see my baby's almond-shaped eyes and presumed it to be a throwback to his Burmese ancestry. I commented on his unusually large hands which seemed to be waving at me through the screen. The technician just laughed. She must have had her suspicions and yet she said nothing. It makes a mockery of the screening process and for that I am thankful. If I had had a choice I would have made a wrong decision through ignorance and fear.

I would like another child. I have spent three years thinking about it. Do I want another child with Down's syndrome? Do I have an amniocentesis? Would I terminate a pregnancy affected by Down's syndrome? If I terminated a foetus with Down's syndrome what am I saying to my existing son - I have terminated your sibling because he had what you have? I am telling him that he is undesirable, that I wish he did not have the condition he does. But I do not. Down's syndrome forms a part of my son and to wish it away is to wish him away. I would die first.

But I do not want another child with Down's syndrome. Why? The day-to- day responsibility for my son will never end. He is not going to ride off into the sunset and leave me in my dotage. He will always have the vulnerability of a child and I will always have to look out for him. I am terrified of dying before him. I am terrified that I will never be able to make enough money to keep him free of the state. I have one child already at the potential mercy of a hostile world - two I cannot deal with.

Sadly the general attitude towards handicap (especially Down's syndrome) as something to be feared and wiped out says a lot about our evolving society and our place within it. Relentless medical intervention expresses our fear of human difference, and the insane desire for uniformity. It also says something about a system that only values human beings who are of use to that particular system. The young, the elderly and the handicapped are among the poorest in our society and have the fewest rights simply because they have no profitable use. Where is the cut off point?

The implications of increased screening in this country are very serious because it reduces further the already low status of people with Down's syndrome and other handicaps. Genetic engineering may eventually be capable of eliminating them altogether.

This is terrain that has been fought over by previous generations - lest we forget. Our own generation does not have to die for it. It just has to draw the line and say this is unacceptable. It starts on a personal level, and I hope that any decision I may make in the future is made with courage and not fear.