31 May 2006
One of the routine no-risk, no-questions-asked tests I had when I was early on in pregnancy was called an AFP (alphafetoprotein) test. This is a test carried out on a maternal blood sample which measures alphafetoprotein levels and three other indicators, with a view to getting an idea of the risk of Down’s syndrome. The point of the test is to assess whether or not it is worth considering an invasive diagnostic test, that is, amniocentesis.
According to this study, based on a sample of 46,193 pregnant women:
- 88 women were carrying babies with Down’s syndrome.
- 71 of those women had a positive AFP test, and 62 went on to have amniocentesis with 59 mothers subsequently choosing to abort.
- 17 of the Downs pregnancies had a negative AFP test.
- 20 children were born with Downs.
- The study does not say what happened to the “missing” 9 children, who were neither born with Downs nor aborted following a diagnosis; I suppose we must assume that 9 pregnancies aborted spontaneously.
This makes the AFP test seem like a relatively useful screening method. The chance of a false negative is 19%, but the test did pick up 81% of Downs cases.
However, there are some other really important points about this test.
The test gives you a positive if the computer says your risk of Downs is 1 in 300 or worse. This means that there is a very high chance of a false positive, that is a positive AFP test in a case where the baby does not have Downs. In the study sample, there were 3,200 false positives, which was 98% of all positive results. 7% of all women – one in 14 – given the AFP test had a false positive.
What’s the problem with a false positive?
Firstly, once you get the results, you immediately face a decision whether to proceed to amniocentesis. Amniocentesis is a procedure with a number of risks, including that it can cause miscarriage. There is generally thought to be about a 1% chance of the procedure leading to miscarriage – see this review for an assessment of the studies done. The real risk depends on other factors, usually beyond the control of the mother, such as the level of experience of the person carrying out the procedure (see this summary of evidence). Other risks include damage to the baby, particularly limb defects, and maternal infection which can even cause death.
(NB The only risk referred to in the NHS patient guide is the risk of miscarriage.)
A positive AFP test exerts considerable pressure on a woman to go ahead with amniocentesis, with all its attendant risks. The idea that 7% of all pregnant women should be routinely subjected to this pressure on the strength of a false positive is, frankly, shocking.
43% of women at the lower-risk end of the AFP-positive scale underwent the procedure, and 74% of women at the higher-risk end did so. No figures are given for the numbers of women who lost their babies because they went on to have the invasive test following a false positive. If we assume that at least half of the 3,200 affected women had the test, and 1% of those had a miscarriage as a result, then we are talking about at least 16 healthy babies lost unnecessarily, as a result of these false positives.
No figures are given for the number of women (if any) with a negative AFP test who went on to have amniocentesis as well, but I imagine that very few if any would have been encouraged to do so. It is only those with a positive result who are at all likely to be pressured into amniocentesis, even though there is a 98% chance that the positive result is a false one.
Another problem with amniocentesis is that it will not normally be done until 15 or 16 weeks, because if done earlier the risk of miscarriage is significantly greater. The results can take up to three weeks to come back, so a woman could have got to 19 weeks or later before she discovers whether or not her baby has Downs.
By now, she will very likely have felt her baby move, she will have heard its heart beat, seen it on at least one ultrasound scan, probably more. And all this time, for several weeks (ever since the positive AFP test) she will have been wondering – “Is my baby defective?” “Can I keep it?” “Should I let myself love this child?” “Should I even let myself think of this foetus as a child, as anything more than an alien *thing*?” Her whole being will be taken up, for weeks, with an internal struggle about what to do if the diagnosis is positive.
And if she chooses not to proceed to amniocentesis, that internal struggle will go on not just for weeks but for months. For months she will be wondering, “Will my baby be normal?” She will be alternatively reassuring herself that it’s only a 2% risk and beating herself about the head and heart with the fear: “What if…?”
Those are the problems with a false positive.
They are real, serious problems and risks – pressure to undergo a risky procedure, miscarriage directly caused by that procedure and, perhaps most importantly (because it is universal), real and significant emotional harm and distress.
When I was asked whether I wanted the AFP test, I was not told any of this. I was informed, as I remember, that the test would give me a risk rating for Downs, but not a diagnosis and that if necessary further tests could be carried out to make a diagnosis.
I was not told that the AFP gave a positive result for as little as a 1 in 300 risk. I was not told that 7% of women get a false positive, that 98% of positive results are false positives, or that the test only picks up 81% of Downs cases anyway. I was not told of the emotionally charged situation in which I would find myself if the test did give a positive result. I was not told that the “further tests” that might be considered if the test was positive were themselves risky or that the decision whether to have those tests would be such a difficult one to make.
In short, I was not given anything like enough information to make an informed choice about whether to have the AFP test. I was not told, and it never occurred to me to ask, because the test was presented as just one more standard, routine, everyday check that all women go through. It was never suggested that I or anyone else might ever have any reason to do anything other than tick the consent box. I ticked the box.
(Thank heavens, in my case, the AFP test was negative and I didn’t give it a second thought, any more than I did any of the other tests that were done on the various samples I gave that day.)
I suppose this is just one more way in which the healthcare system disempowers pregnant women. We are denied the information we need to make informed choices at every turn. We are encouraged to rely entirely on the advice of the health professionals. Despite much talk of “informed consent” and “choice”, we are denied any real choice because decisions are presented to us as easy and obvious and only those who already know different will ever feel able to resist.
So this is just one more example of that systemic failing. One more example of women being treated as children – infantilised – by a system that has already decided what is best for them and assumes their agreement without making any genuine effort to engage them in the decision.
And it is also, I think, an example of a systemic failure to take emotional harm seriously. It is evidently considered acceptable to expose women to the emotional harm and distress of a false positive without prior warning, discussion or counselling.
30 May 2006
Take: 1lb of minced beef; 1 beaten egg; smidge of tomato puree; seasoning (I used black pepper, pinch of tarragon, splash of Worcestershire sauce); cooking oil; and some stilton.
1. Thoroughly mix up all the ingredients, apart from the oil and stilton, in a bowl.
2. Divide the mixture into 4 lumps, and make each lump into a burger shape (the easiest way is to squash it into a ball in your hands, then flatten it). The shapes don’t have to be identical, but they cook more evenly if they are all about the same thickness.
3. Fry the burgers in the oil, on a moderate heat, for a few minutes and then carefully turn each one over.
4. Add stilton onto the cooked side and continue to cook for a few more minutes, letting the stilton melt. If you aren’t sure whether the burgers are done, cut one open to check whether it is cooked through. A little juicy pink is better than overdone and overdry!
5. Serve with a big fresh salad.
Makes 4 burgers. If you don’t want 4, then only cook what you do want and store the rest in the fridge, wrapped and uncooked, for another day.
Stilton isn’t compulsory. You could skip it altogether, or substitute any other kind of cheese. You could use bacon, or mushrooms, or relish, or hot mayonnaise, or whatever else you like.
Either way, these burgers take very little more time or effort than the dry hockey-puck style frozen kind and are much yummier and healthier.
29 May 2006
And – what is a feminist anyway?
It seems to me that if you ask: “what is feminism” to twenty different people you will get twenty different answers.
Some will describe it in terms that have universal and obvious appeal, for example by saying it is the simple belief that women should have equal status with men. Few could disagree with that as a premise, although there may be fierce disagreement about what “equal status” should entail. Somebody somewhere once said (although I can’t remember where I saw it, maybe it was even on another blog somewhere) that every woman is a feminist. I suppose she meant that every woman almost necessarily believes certain things – such as that women are human beings rather than objects – and that these are the only things you need to believe in order to call yourself a feminist. Doesn’t that rather reduce feminism to the point where it no longer means much at all? You might say that is reaches the nub of the question “what is feminism”, and answers it neatly and clearly. But, even if that is so, it is hardly helpful, because it does not take us very far into understanding anything much at all.
Others will describe feminism in terms which make it appear almost universally offensive, for example by characterising it as man-hating, as unfeminine or unwomanly, as dangerous or stupid or both. Few people could disagree that man-hating is self-defeating (at least as a universal principle) and few women are indifferent to the charge of being “unwomanly”. But man-hating is not inherent in feminism, and unwomanliness depends – of course – on your definition of “womanly”. That is precisely the thing that many feminist challenge, this cultural definition of womanliness, and this cultural rejection of a woman who not only fails to comply with the requirements but actively rejects them and entirely denies their validity. This is the battle-ground where misogyny and misandry collide, and feminism seems to get ugly.
But my feeling is that most people, at least most people who identify themselves as feminists, will have more interesting claims to make for feminism.
The central ground that seems to unite all feminists is the idea that women’s position in society is not what it should be, that it should be different and better, and that it should entail more and better choices being available for women in general.
But feminists seem to be always falling out. They seem to disagree fundamentally about how we got into this mess, about what we should be striving for, about how we could get there. There are more than two or three camps, there are innumerable camps. Almost anyone can find a camp that suits them, pitch a tent, and run up a flag that says “We are Feminists!”
Is that fantastic? I think so. I think it means that there is a richness and diversity to the thing that we broadly call “feminist thought”, which means it is something very far removed from the ideological. It leaves space for people to come together, work or talk or think or argue together, learning and developing all the while, and then, if they wish, move on to something else, some other idea, some other place to learn. As long as nobody gets ideological – or, at least, as long as there are plenty of people who are not ideological – then things will change and grow all the time and never get stuck in unthinking ruts.
Am I a feminist? Yes.
A while ago I suspect I would have shrunk from the term, thinking of man-haters and idealogues. But I need and believe in and want so many of the things that feminism has achieved for me, how can I turn around now and reject it? Without the feminists of the past, I would have no vote, no property, no job, very little education, no status. I would be tied to a husband, with no right to control anything about either my life or that of my daughter. I wouldn’t even be able to write about these things on my blog.
I’m not sure exactly which “brand” of feminism (if any) will suit me best. Not yet. I suspect that, like each of the twenty people we asked right at the start of this post, I will develop my own ideas about it as I go along. I’ll probably start in one camp, then find that the fires are too hot or the water is too far away, and perhaps try another. Eventually I will realise that other people’s camps will always be set up in a way that suits other people and I will think about setting up my own camp. Or maybe I will do things the other way around – start out by trying to reinvent the wheel and then realise that I would do better to make grateful use of what others have done before me.
(I shall stop this camping metaphor now before it becomes hopelessly mixed with wheelwrighting and the whole thing descends into silliness.)
So: I am a feminist. I have confessed it.
Now I need to go away and find out what it means!
27 May 2006
Take: some pasta; some olive oil; about 2 cloves of garlic per person; and a good pinch or two of dried herbs.
1. Put the pasta, well-covered with water, in a saucepan to cook.
2. Meanwhile, peel and finely chop the garlic and use a small pan to warm it with the herbs and olive oil. Use about a tbsp of oil per portion of pasta. When the garlic starts to sizzle, turn off the heat.
3. When the pasta is cooked, drain it thoroughly and return it to the saucepan. Pour on the garlic/herb/oil mixture and mix thoroughly.
This is pretty plain, and is ideal on its own for days when you have eaten your own bodyweight in junkfood while your baby was napping and you feel a bit sick, but you have to make and eat dinner anyway, for the baby.
To jazz it up for other days, try stirring in a dollop of cream and/or sprinkling on some grated cheese. You could also use it as an accompaniament rather than just eating it on its own.
27 May 2006
My own little Kylie’s doing the Locomotion… at least, she’s trying.
Over the last few weeks she has gone from taking a couple of steps at a time very tentatively and leaning heavily on both of my hands all the way to waddling fairly cheerfully, still holding both of my hands but just for balance. She’s walking now holding just one hand. She does hold on for dear life, bless her, but it is great progress nonetheless.
I strongly suspect that all this thuggery business is a side effect of her developmental leap, as well. (Phew, no baby straitjackets required just yet.) Partly there is a natural irritability that comes whenever she is cooking up something clever. And partly, I imagine, she is feeling a bit of general frustration at not being able to do it.
When another baby whose toy she is after just picks it up and walks away, of course she is going to get annoyed and grab the baby (“Oi, come back here with that!”) if she can’t chase after her. And it will feel even worse right now, when she is so close to getting it herself – it will feel like a snub, like rubbing her nose in her own inability to do it yet.
So I plan to spend lots of time this weekend giving her the opportunity to practice her walking, with the hope that once she has mastered it the frustration will subside for a while and I can stop calling the poor girl Kylie.
26 May 2006
My little angel – what is the world coming to – she is a thug. I am heartbroken. But what else can explain today?
I went to see her as usual at lunchtime and one of her two key carers (who for present purposes I shall name Sally) asked me “What do you normally do at home about discipline? I mean, if she’s doing something she shouldn’t.”
Several dark and horrible thoughts rushed through my mind. Oh, no, she’s been hitting the other babies. They think it’s my fault because I don’t discipline her at home. They think it’s my fault because I hit her at home!
What do I say? What do I do? Mustering inner reserves I ask, affecting calm: “Why, what has she been up to?”
Sally explained that she had been unusually aggressive towards the other babies today. Throughout the morning, we’ve never had to say her name so often. It’s been constantly – “Kylie*, please don’t do that” or “Kylie, come away please” or “Kylie, be nice” or “Kylie, be gentle” or “Kylie, let’s share that toy” and so on and so on.
* Not her real name, but suitable, I think, for the thuggish bruiser that my baby has evidently become.
The problem seems to be that when another baby has a toy or something else that she wants, she just goes and takes it from them, and has been grabbing and shoving them if they protest or resist. She’s a big girl, my Kylie, and very strong for a baby, and can easily knock the others down – even the older ones.
I suppose you’ve tried just picking her up and removing her from the situation, taking her away from whatever it is, and distracting her?
Yes, but as soon as we’ve then taken our eye off her just for a moment she’s back in there again, being quite aggressive.
Well, she’s certainly very fixed in her purpose, and determined and persistent. She is strong, and she is too small to understand or realise that other people even have feelings, never mind that she should care about them. Her strength and will far outstrip her as yet undeveloped compassion and comprehension.
So what to do about it? She can’t go on beating up the other children, it isn’t fair on them or on the nursery staff. And the problem can’t be solved by removing her from the company of other children – she must go to the nursery, or to some alternative form of childcare where other children will inevitably be present, because otherwise neither of us would eat. Nor can anyone explain to her that shoving other children out of the way hurts them and is wrong, or that she should share her toys. She just doesn’t understand. She’s too little.
How to “discipline” a baby who doesn’t understand? If she doesn’t understand, then something like time-out is merely purposeless punishment, which is no better than out and out cruelty. How to make her understand?
It’s on days like these that I feel very alone, and impotent.
25 May 2006
A couple of weeks ago, I wrote here about the “problem” of a falling birth rate in Russia.
Today, I was listening to a radio discussion of this issue and of how the same issue is affecting many other industrialised countries.
The problem seems to be that once women are permitted to work outside the home, once they are allowed some economic power and even a limited freedom to make some of their own choices, some of them are choosing NOT to have children.
Why would they, when motherhood is unpaid and unvalued? Why would they, when they would be expected to take on the work of mothering in addition to their economic activities, with little or no practical help from the father – or, indeed from anyone else? Why would they, when “I’m a full-time mother” means “I don’t work, I sponge off my husband / partner / family / taxpayers, I have no status of my own”?
Yet governments everywhere are scratching their heads, it seems, just at a loss to understand what they can do to encourage women to have more babies.
Well, duh. We need a revolution – change the world into a matriarchy and people will be just queuing up for motherhood. Sign us up for seven kids! But that woudn’t suit those who currently stand to benefit from patriarchy, would it? Fancy them promoting motherhood as genuinely important and valuable? Think of it: treating women and mothers as superior because of their ability to create life – rather than inferior, on a level with domesticated animals, about equivalent to a cow. Fancy that? It’s not going to happen, not without a revolution. The people who could make it happen are not women and will never abdicte their power and importance in favour of women.
Next question – does it matter that birth rates are dropping?
The world is overflowing with people. Some countries may struggle with a low birth rate, but others are threatened by population explosion. So, in this radio show, the question was very sensibly put: if your birth rates are plummeting and you need new workers to support your ageing population – why not import them by relaxing immigration restrictions?
The speaker from Russia:
We have seen how countries in Europe with liberal immigration laws end up with increasing xenophobia, nationalist parties on the rise and terrible racist crime. The same would happen in Russia if we liberalised the immigration laws here. It is a very difficult problem, we don’t want all that xenophobia to come to Russia.
The speaker from Japan:
If people want to come to Japan, they must learn Japanese as we do not do things in English, not in other languages than Japanese. So even if we liberalised the immigration rules, new workers would not be able to come because they do not speak Japanese. We are trying to get immigrant workers to help care for elderly people, but we want single workers, not families, so that won’t solve the problem with low birth rates anyway.
Says it all really. We’ll be stopping foreigners from coming here, but it’s not because we’re xenophobic – it’s because we want to prevent xenophobia. And, much as we wish we could solve this problem by encouraging new immigrants, we just can’t see how it could work. I mean, Japanese babies grow up Japanese don’t they? But immigrants don’t. It just wouldn’t work.
No wonder they need to step up production from native wombs. The foreigners are just not good enough.
Ugh. Why are people so STUPID?
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