After I wrote this post on antenatal screening for Down’s syndrome, I did a little research to find out a bit more about the condition.
Starting from a position of complete ignorance, I had assumed that it must be a pretty horrid syndrome to have, given that we go to such lengths to screen for it and given that so many women choose a late term abortion rather than continue with a Downs pregnancy.
Remember, that in this study, most women with a high risk of Downs went on to have the risky amniocentesis diagnostic testing. And of the 62 women receiving a positive diagnosis after amniocentesis, 59 chose to abort the foetus. Remember also our estimate that, as an unintended result of the testing process itself, at least 16 healthy babies were lost.
I wanted to get a feel, in my own heart and mind, for whether I felt that it was “worth” giving up 16 healthy babies in order to identify and prevent 59 babies with Downs from being born. Or, more accurately, in order to give the 62 women who wanted it the choice whether to prevent their Downs babies from being born.
In my own heart and mind, I think a problem would have to be pretty bad before I would consider aborting a foetus because of that problem. It would have to be the kind of problem that meant the child would have a very low life expectancy, a very high risk of serious health problems, or very poor expectations in terms of quality of life.
So I went and had a look on the Down’s Syndrome Association website to find out a bit more about it. Well, I was surprised. I confess that I was entirely ignorant about it, so it was daft of me to have preconceptions. But the way people talk about Downs, and the way people abort babies who have it, I was expecting it to be a lot worse than it is.
All people with Down’s syndrome have learning difficulties. Some have heart problems or other health difficulties, but these are not usually life-threatening and can generally be well managed by monitoring and suitable treatment. The degree of learning difficulty varies significantly and cannot be predicted genetically. People with Down’s syndrome go on to lead happy, fulfilling, ordinary lives. They learn to walk, talk, read, write, form relationships, hold down jobs and play a full role in the community, just like anyone else.
Given what I read today, I would never want to abort a baby just because it had Down’s syndrome. I don’t think I’m particularly humane, or particularly self-sacrificing. I’m certainly not anti-abortion. I just don’t see why a learning disability (which could only be mild) and an increased risk of certain other (only potentially serious) health problems are in themselves a good enough reason to reject a child.
Would you reject a child that you knew had a high risk of developing eczema or asthma? Would you abort a pregnancy because you knew a certain type of cancer ran in your family and there was a very high risk of your child carrying the same gene? Would you give up a baby that was otherwise wanted because you knew it would develop serious dyslexia?
I’m not saying that a woman ought to carry such children to term. It is up to every woman, every family, to make their own decision.
But it seems remarkable to me that so many pregnant women would abort a child just because it had Down’s syndrome. It seems that only the brave few keep these babies – perhaps they are the fanatic pro-lifers, or perhaps the women who know they’re on their last chance for motherhood. It seems that the norm is to abort if you can. Out of 71 women with a positive AFP test, 62 chose to have amniocentesis because, presumably, they thought they would abort if the child had Down’s syndrome. Of those 62, 59 actually did abort their Down’s baby.
I’m not saying that in any given case the decision to terminate is the wrong one. I’m just saying that the numbers seem all wrong to me.
I wonder why this is? It stems, I think, from our desire – our need – for a perfect baby.
And that opens up a whole can of worms – which I will leave squirming away in anticipation of Part 2 of this discussion. There is plenty more I want to say, but my rotten virus programme has been keeping me occupied and it has got late. I will hold forth again another day.