Thursday, October 19, 2006

Prevention better than the cure? #2

Impairment is part of the human condition. We occupy bodies which exist in the material world. And all materials - particularly organic materials - are fragile, breakable and perishable. We share this world and compete with many other organisms, some big, some small, some microscopic. We live in an environment full of spikey bits, high places, volumes of water, hard surfaces, fast-moving objects and a changeable climate. We have fantastic brains, which remain as vulnerable as they are complicated.

Because we are so smart, there are many ways in which impairment and premature death are effectively prevented all the time. There are also ways in which the impact of impairment has been reduced, through medicine, technology and social change. Most of this is absolutely brilliant.

However, all of it has its limits. Maybe there will be some technology in the future which allows everyone to have fully working bodies and brains throughout a lifetime, but none of us are going to live to see it. For the foreseeable future, impairment is part of what makes us human.

I do think that a lot of harm is caused to us all by pretending otherwise. And one area in which causes a great deal of harm, as I started writing about on Monday, is around choices about bringing children into the world.

The point I started making then was that nobody can choose whether or not to have a disabled child. The only genuine choice a person has is whether or not to have a child.

I hope I would never judge any individual who chose to terminate a pregnancy on the grounds of disability; each decision must be very complicated, personal and painful. I sympathise with that, simply because the way people must feel about it, regardless of whether it is the same as the way I might feel. And I can think of a number of reasons why people would choose to do this:
  • The child is likely to die later in the pregnancy or very shortly after birth and it is felt that it would be better to take control of an inevitable ordeal.
  • The child is likely to have a very poor quality of life to the extent that it is felt that no life would be better than that kind of life.
  • The additional stress, effort and difficulty associated with caring for a disabled child makes the parents' plans for their future life unviable and what was a wanted pregnancy is now an unwanted one.
All of these issues are necessarily subjective. Every individual's gauge of what suffering is and how much they can take on will be different. Such is the case about many of the decisions we have to make in life. However, the issue that troubles me is that termination is the only sure-fired way of preventing any of the above outcomes in any potential children. If you have a child, you risk having a disabled child.

Take Down's Syndrome. The most marked aspect of Down's Syndrome is a learning impairment, which can vary greatly, but the average IQ for someone with Down's is about half of average - my IQ is measured at about one and a half times average, to have a gauge of how undramatic this difference might be. People with Down's Syndrome tend to be more vulnerable to various medical conditions and their life expectancy is reduced to middle-age, although some people with Down's have very serious heart problems and can die very early on indeed.

No life better than that kind of life? Well, you'd have to speak to someone with Down's Syndrome. I have known people with learning impairments who are largely contented and others who, for all sorts of reasons, aren't very happy at all. Like the rest of us, it depends on all sorts of things but chiefly the quality of the relationships a person enjoys with other people.

Around 90% of pregnancies where Down's Syndrome is diagnosed end in termination.

I recently came across the following paragraph whilst researching an unrelated matter on the Health Technology Assessment website (the research wing of the UK Department of Health), about antenatal screening for Downs Syndrome;
In general, serum screening is more cost-effective than screening based on maternal age alone at detection rates of about 50% or greater. As the number of screening markers increases, the cost per pregnancy screened increases but, if an extra marker is sufficiently discriminatory, the cost per Down's syndrome birth avoided may decline. For example, the estimated cost per pregnancy screened and the cost per Down's syndrome birth avoided is: £8.90 and £25,600 for the double test; £9.60 and £22,700 for the triple test, and £11.60 and £23,100 for the quadruple test.
Prospective parents in the UK are very unlikely to have a life or death decision on how many Reichmarks it might cost the NHS to have that child. However, this does raise questions about the influences bearing down upon these complicated, personal and painful decisions. Especially given the pretty appalling detection rate of the non-invasive tests available just now (amniocentesis is far more reliable, but far more dangerous to the foetus).

And I find myself very confused about the logic. To be honest, I find it a little sickening that I can even get my hands on a calculated cost per Down's Syndrome birth avoided because the screening and abortion is purported to be all about quality of life, health outcomes and informed choices. But as well as this, these calculations aren't real. Create new human beings and you create disabled people.

So you have a thousand foetuses. One or two of those foetuses will have Down's Syndrome, so you terminate them and save the taxpayer some money. Even if your women take their folic acid, at least another foetus will probably develop Spina Bifida, which if we accurately detect it, we can get shot of too.

Two or three children will be born with Cerebral Palsy. But by the time we know this, or about any congenital sensory impairment, it is too late. And the awful truth is that eighty percent of disabled people make it into the world free of impairment.

Perhaps a slightly smaller proportion in the UK - that's a UN statistic which includes a significant proportion of impairments caused by malnutrition. But it's still going to be most of us who refrained from stating our intention to have a car accident, catch an infectious disease or experience a psychological breakdown at the point of birth.

I suppose the point I am trying to make - perhaps pretty badly because I have been pushing through significant fatigue to make it - is that vaccination, improved hygiene, education, the reduction of poverty and safer living and working environments are all effective ways of reducing our number. It is a reasonable principle that where people can avoid illness, injury and impairment, it makes sense to do so.

However, I suggest that the prevention of impairment through antenatal elimination is both entirely ineffective and ethically misguided. It is far better to be disabled than to not to exist at all.

I've struggled quite a bit with this post. I should have given up but it kept churning round my head and wouldn't leave me alone. I do hope it made some sense.


Anonymous said...

Friends in the obstetrics game have told me that they have noticed a shift in the reactions of parents over the past few years, to the news that their child is disabled in some way.

Many parents are now angry, because they feel that "they have done everything right" from pre-conception onwards, and have thus acquired almost a right to a perfect child; it must be someone's fault that same had not been delivered according to spec.

I am, of course, speaking only of parents in the developed west; most of the world doesn't have these privileges.

One wonders how this will affect the children.

Anonymous said...

It is unsettling to realize, that had one's impairment been detectable pre birth, ones parents might have chosen to terminate the pregnancy...

Life with impairment is better than no life at all.

That seems simple, but so difficult for some able to grasp.

Sage said...

For my first two babies, I refused all testing during pregnancy. Many friends thought I was being foolish. "What if something's wrong?" But I figured, what if it's perfectly healthy, then is deprived of oxygen at birth? Or what if it's born fine, then something happens shortly after birth, or at any time in its life. There's no guarantees. Life's a page-turner, and parenting has its own set of plot twists.

Mary said...

Speaking as one who would be a disabled parent...

I am not going to start trying for a baby until I am sure that I have reached a level of managing my illness whereby I could accomodate the needs of a baby and the needs of an energetic toddler. This would include dealing with periods of acute illness.

However I would need to think very hard about whether I would be capable of properly looking after a child who was born with a severe disability, which could be described as comparable to acute illness in a "normal" child - but permanent.

The Goldfish said...

Thanks folks,

Mary, I do sympathise with that. And I would fight for your right to be able to make certain choices about that. This post was more about the unspoken influences at work and the ideas which some people tend to take for granted... if that makes any sense.

Anonymous said...

My son has Down Syndrome, and I can tell you now that he is more 'normal' than 'abnormal'. He is a very happy 10 month old baby, loves to laugh, clap his hands, and play peek-a-boo. He has reached his developmental milestones on target with typical children who do not have DS. Most people with DS do not have severe disabilities. I am a public school teacher; If every woman who got a diagnosis that their child would be disabled/delayed to some degree terminated, half of my 22 First Graders would have never lived. I know that the decision to terminate a fetus diagnosed with DS is a personal one, but most women will make this decision as a result of dated/negative information, and ultimately, fear.