ALL YOU NEED IS LIFE

A fortnight ago, Dominic Lawson became the

father of a baby with Down's syndrome. He experienced a mixture of elation and sadness

AFTER ONLY two and a half hours' labour Domenica emerged at lunchtime on Thursday 1 June, with a shocked, empty stare on her face. She was also completely blue and inert. 'Slow coming round' was the midwife's later, written, observation. Only when the six-pound five-ounce form was finally bullied into breathing did I finally stop asking — in the useless way in which fathers drive busy midwives dement- ed — 'Will she be all right? Will she be all right?'

But even after my own abject panic was ended by hearing the first splutterings of a pair of tiny lungs, there remained in the room a faint but palpable tension. The duty pediatrician did not smile while she examined Domenica with what looked, even to my untrained eyes, like profession- al concern. Then she wheeled the little baby out of the room, and asked me to fol- low both of them down the corridor, to the office of the senior consultant.

He went through a similar rigmarole of clinical examination, all the while asking a series of seemingly irrelevant questions: what was the condition of any other of my children? what sort of pregnancy had this been? Perfectly normal, I said, except that my wife had broken her leg in four places, half way through her confinement, and was still on crutches. The consultant seemed not to hear this last remark, and interrupt- ed my off-pat explanation of how Rosa had sustained a quadruple spiral fracture of her right leg while trying to get into her car.

'Yes, well, we have a problem.'

'What?'

'I am certain that your daughter has Down's syndrome.'

This came as an enormous relief. Since our second daughter, Natalia, had emerged last March too premature even for the magic of modern medicine, at 22 weeks' gestation, I had been morbidly anx- ious throughout the succeeding pregnancy. The consultant's 'We have a problem' I instantly interpreted as 'This one won't make it, either'. His 'Your daughter has Down's syndrome' sounded more to me like 'But this one will live'.

The doctor then repeated his earlier clinical examination, this time giving me an idiot's guide to my daughter's ten- minute-old body. 'Here, you see her grip is very weak. She is very floppy. Her head has three fontanelles, instead of the nor- mal two. And, here, her tongue is very large. If you look at her eyes, you'll notice these epicanthal folds, and a slightly Asiat- ic appearance. If you look at her ears, you might be able to see how they are folded over at the helix. You notice, here, that there are some extra folds of skin behind her neck. Now, if you look at her feet, here, and here, you'll see that there is an unusually large gap between the big and and first toes. These, I'm afraid, are all phenotypes of Down's syndrome. Now, to be absolutely certain, we can take a blood sample, and do a chromosomal analysis. But that would be a formality in this case, and is not necessary for my diagnosis.'

Two emotions coursed through me as the consultant gave me a guided tour of the stigmata of Down's syndrome. The first was anger. While I understood that the doctor was only doing his professional duty — to explain as clearly and as quickly as possible the condition of his patient — I wanted to shout out, 'This is my daughter you are prodding, not some random strip of flesh.' The second emotion was love.

This surprised me. While I love my eldest daughter, Savannah, it took me many months to do so. During the earliest part of her life I found her endlessly fasci- nating, and a source of great pride, but I did not feel the pang of love. I gather that this is quite common among new fathers. Or, at least, that is what I told my wife.Yet now, after so little and so strange an intro- duction, I felt an intense, almost physically painful love for this third daughter.

It would be a sin of omission not to record that in the succeeding days I did not also feel a sense of grief. Grief at the thought that Domenica's life expectancy is not much more than half her elder sister's. Grief at the thought that she will almost certainly not experience the joy of having children herself. But this grief always co- existed with the feeling of elation which accompanies birth. It is a dizzying mix of emotions, this combination of sadness and elation, and I suspect it is appreciation of this that lies behind the anxiety with which some friends approach us. They want to sympathise and they want to congratulate, but how do they do both at the same time?

My wife has experienced a different form of grief, which, say all the textbooks, is absolutely characteristic of mothers in this predicament. They grieve for the loss of the child they thought they were carrying. Many mothers-to-be seem to have a very clear idea of the nature of the person who is squirming and kicking in their belly. That person does not have Down's syndrome, with all the attendant problems, both phys- ical and mental. But this sense of two dif- ferent people, the imaginary perfect child and the real handicapped one, is, of course, no more than a powerful illusion.

It is not even as though Down's syn- drome is something which afflicts normal children in the womb, as a result of stress or illness, although that was what many doctors tended to believe until 1959, when a French professor named Lejeune declared that the characteristic features of Down's syndrome were genetic in origin. He discovered that the Down's children had 47 chromosomes in every DNA molecule, instead of the normal 46, and that this extra genetic material, amounting to no more than about 50 to 100 genes in all, was the cause of all the differences which later come to light — the sort of dif- ferences which my daughter's pediatrician was so anxious to explain to me.

The DNA make-up of a person is settled almost at the moment of conception, when the female and male nuclei, which contain the chromosomes that will endow the off- spring with his or her hereditary character- istics, fuse to form a single nucleus. The extra characteristics of the future Down's baby are caused during the first cellular subdivision of that nucleus, when 47 chro- mosomes are created rather than 46. This cellular self-multiplication is then repeated constantly for approximately 266 days, at the end of which you have a baby ready for delivery.

It is worth spelling this process out because it demonstrates first, that the Down's baby is as much a product of his or her parents' genes (and of their parents') as any other child, and second, that there is no sense in which the Down's baby could ever have been constructed in any other way, once conception had occurred. There is no possible alternative Domenica Law- son without Down's syndrome. That is her identity, her very essence, along with all the other genes she has inherited from us.

Her elder sister was formed by a differ- ent merging of the same parental genes, along more orthodox lines, on the night of the Conservatives' victory at the last gener- al election. And the extraordinary similari- ties of these two girls, at least as babies, also illustrates how wrong it is to think of Down's children as something 'other', a mere aberration of nature. Despite all the peculiarities outlined by Domenica's pedi- atrician, she looks like a twin of her sister, as I am constantly reminded by the picture of Savannah aged two weeks which I carry in my wallet. They have a number of iden- tical facial expressions. And, exactly as Savannah did, Domenica sleeps in an absurd parody of deep thought, with her right fore-finger resting on her top lip and her right thumb appearing to prop up her chin.

One visitor, a good friend who has the endearing habit of uttering exactly what is on her mind, exclaimed with relief upon seeing Domenica, 'Oh, I was so frightened about what she would look like. But she looks just like her sister.' I do not repeat all this out of parental pride — or not just out of parental pride — but to make the point, again, that the Down's children are not monsters formed at random. Of course Domenica's intellectual and physical progress will never be as rapid or fluent as her sister's, and it will doubtless cost both her and us enormous amounts of effort. But the point is, she will continue to devel- op, however slowly, along lines which will reveal her to be a true mixture of the genes which her parents married in order to perpetuate .

And yet. And yet a whole industry has been developed to make it increasingly improbable that children like Domenica Lawson will be allowed to live. The National Health Service advises all moth- ers-to-be over 35 to undergo medical pro- cedures which extract fluid from around the foetus, which is then subjected to chromosomal analysis. The NHS provides this service free because the probability of Down's syndrome — far and away the commonest form of congenital mental handicap in the population — appears to grow rapidly when the mother's age increases beyond the mid-thirties.

But these procedures, either chorionic villus sampling or amniosentisis, have a significantly higher statistical risk of caus- ing miscarriage than the 36-year-old moth- er has of carrying a Down's syndrome baby. The chances of that woman having a Down's baby, regardless of whether or not she has already had such a child in the past, is about one in 300. But even the less risky of the two procedures pressed on middle-aged women by the NHS, chorion- ic villus sampling, will, in about one case in a hundred, produce a spontaneous abortion.

According to Dr Miriam Stoppard's Pregnancy and Birth Book — which is by no means hostile to these procedures 'very occasionally CVS may lead to rupture of the amniotic sac, infection and bleeding. Even so, the procedure only seems to increase the risk of miscarriage by 1 per cent.' Even so? Only 1 per cent? It is amaz- ing that these facts are meant to reassure us. There is method in this madness, how- ever. The NHS will provide, gratis, an abortion, if their tests show that the mother is expecting a Down's baby; an abortion even well after the normal legal limit of 24 weeks into the pregnancy, 'if there is a sub- stantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handi- capped'.

This is nothing less than the state-spon- sored annihilation of viable, sentient foe- tuses. In the People's Republic of China, the authorities wait until such children are born naturally, before starving them to death. In Hitler's Germany, even before the final solution to the Jewish 'problem', the Nazis were exterminating wholesale the mentally retarded. In this country the weeding-out process is done before birth, and only with the parents' consent. I do not think, however, that this constitutes a tri- umph for democracy.

To the extent that this policy is more than half-baked eugenics, it is, to take the most charitable interpretation, based on the utilitarian idea that the child born with a physical or mental handicap will be an unhappy person, so unhappy that he or she would have been better off dead. One needs only to state this proposition to understand how presumptuous it is.

Not surprisingly I have, in the past week, been told by a number of well-meaning people that 'they' — meaning children with Down's syndrome— 'are particularly happy people'. I have no idea if this is true, and I am inherently suspicious of such generali- sations. But I see no reason why Domenica should be an unhappier person than her older sister, despite the extra chromosome which she has in her every cell.

Yet one or two acquaintances have still asked us, 'Didn't you have the tests?' My wife says she thinks it will be difficult to remain friends with such people. I think they are merely missing the point, although it is a very important point.

Of all the letters which I have received since Domenica was born, perhaps the one which grasped this point best was from a fellow-atheist who wrote, after approving of our not 'having the tests': 'The reason why [such a decision] is admirable, of course, is that the sanctity of life is not just some obscure abstract principle. A life is a life, and every life can be filled with all kinds of positive things and real happiness — as I am sure your daughter's will be.'

At the moment, however, the happier of our children is the elder. She hated being the only child. Indeed she would often wail, heart-rendingly, 'I am so only! I am so only!' She is not only any more.