Page 5, 3rd August 1990

3rd August 1990
Page 5
Page 5, 3rd August 1990 — Nicholas Dunne on the dilemmas of tests during pregnancy

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Nicholas Dunne on the dilemmas of tests during pregnancy

Stereotypes that mislead Down's parents

"ABORTION — Stop It" says a postcard pinned to the noticeboard of my local church. It's a crisp summary of a campaign which has received the church's commited support. It's a simple, clear cut statement.

However, as someone who has recently become a father for the second time, I am troubled by the nature of this slogan. To me it is a comfortable rallying cry rather than a genuine guide for people faced with one of the greatest personal dilemmas of our age.

Whilst the vast majority of abortions are the result of unwanted pregnancies, the dilemma of whether or not to continue with a pregnancy can still present itself to those for whom conception is a happy and welcome event.

• • All parents hope for a safe .pregnancy and a healthy child. The medical profession wants that too, and so there is a whole

network of scans and tests to . -monitor the progress of mother and baby. This is particularly true if you are "at risk" of giving birth to a handicapped child.

For example, a woman aged 35 has a 1 in 300 chance of having a Down's Syndrome baby. By the age of 40 the odds have increased to 1 in 100, by 45 to 1 in 30.

Is it unreasonable to wish to avoid hying with uncertainty? We want to know that everything is okay, and so we are happy to co-operate with tests which are now almost a routine part of pregnancy. But what if everything is not okay? What do we do with that knowledge?

As Catholics our response to handicap is defined by clear moral guidelines. Often these are expressed in terms of .parental self-sacrifice. Whilst this is an important human ,quality, it can be overstated. Most of us are not saints. Those who are admired and rewarded for a life-time of self sacrifice to the care of their handicapped children can seem distant figures — rare individuals whose qualities are far and above those of most of us.

Their example can seem too remote, the challenge too overwhelming. The option of abortion, legal or illegal, will always be there. It is a real dilemma from which Catholics are not excluded.

Stan Brown at the Down's Syndrome Association (DSA) has counselled many parents who, at a time when the mother

is beginning to feel the baby's movements in her womb, have

had the results of tests which show that their child will have Down's Syndrome. Their feelings follow a common, and natural, pattern.

"The first stage is one of complete rejection," Stan says. "Their worst fears have been realised, and they react against the whole idea of having a handicapped child. They just don't want it."

If they are able to move beyond this stage there is still a genuine fear about the quality of life the child can expect. They want to do what is best for the child, but wonder is it right to continue with a life that will always be highly dependent? What hope is there when the child reaches adulthood? What about when parents die or become too old or sick to look after him or her? Is the child's future only one of suffering, with a real chance of eventual neglect?

These are real dilemmas, made more difficult by a common sense of guilt. Why us? What did we do wrong?

Stan Brown has noticed that many people with a strong Christian belief are troubled by the thought that the conception of a handicapped child is a punishment from God. For Catholics this can be particularly true if the parents are unmarried, or have been divorced. In these instances, parents are guided to priests and ministers associated with DSA with whom they can discuss their fears.

It is the common stereotypes about down's Syndrome which specifically concern DSA, and in counselling parents Stan's aim is to present positive, yet realistic advice.

Developments over the last ten years in early stimulation techniques mean that many Down's Syndrome children today are more skilled than their counterparts of even five years ago. The emphasis is on recognising that they have a potential and helping them to realise it.

Legislation introduced in 1986 has opened up a wide range of opportunities for integration within mainstream preschool and primary education. For some, there is the prospect of taking GCSE exams, training on word processors and computers, and even learning to drive a car. An increasing number of schemes offer sheltered employment and supportive housing which enable adults to live independently beyond the family home.

Counsellors like Stan are clear that having Down's Syndrome is not in itself a reason for terminating a pregnancy. "However, we do not condemn those who do have an abortion. In the end, parents have to make their decision about what is best. Even after talking to us, many decide not to continue with the pregnancy."

The time for decision is very short, and not all parents receive counselling when the tests prove positive. The amniocentisis test is carried out, at the earliest, in the sixteenth week of pregnancy and the results take three or four weeks to come through.

That is why the DSA is anxious to challenge the stereotypes that often provide the only information to parents at this time. They recognise that, for most people, the news brings despair and they wish to offer a message of hope.

Last year the DSA launched a poster campaign with this aim in mind. The picture of a naked new born boy with Down's Syndrome is startling, even shocking. It confronts you with the very image you hope never to see, and the one which parents expecting a Down's Syndrome child often spontaneously reject.

As such it is very powerful, because it forces us to be honest. Yet it is also a very beautiful image. Like every new born baby, the body has a freshness and vitality that suggests joy, and hope.

At the time of decision parents need realistic, tangible, practical messages of hope to support the moral guidance. The campaign to stop abortion legislation is only part of the issue. The church must communicate, with equal vigour. its experience that handicapped children have a real future and be able to assure parents that they will have one too. It is a challenge we must respond to in our own parishes. How well we are doing?

The DSA's new offices are at 153-155 Mitcham Road, London SWI7 9PG (081 682 4001).

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