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What do you mean by 'success'?

According to my Collins Cobuild, success = the achievement of something that you have been trying to do.

And according to the article 'Screening a success', found in yesterday's (3 May) Mind Your Body ST supplement, 'Singapore has had success in thal screening'. This article came after a much longer one featuring this teenager who has thalassaemia (thal) major.

In short, if you are a thal minor, i.e. a 'carrier', and you marry another thal minor, each child you conceive has a 25% chance of being thal major, 50% of being thal minor, 25% chance of being 'normal'. Thal minors are actually also 'normal', i.e. they don't experience any symptoms; it's just that they are carriers. Thal majors require blood transfusions their whole life because the haemoglobin they produce is defective. On top of that, they need medication to remove the excess iron that accumulates because of the transfusions. This is done through a nightly injection. Therefore, this condition can be very draining physically, mentally, emotionally, financially, etc.

In the article, this is how 'success in thal screening' was measured:
'Only two beta thal majors (alpha thal majors are usually stillborn) were born in 2000, none in 2001, one in 2002, one in 2003, three in 2004 and none last year. There were three in 2004 because two did not have pre-natal diagnosis. The other did but chose to keep the baby.'

In other words, they have been trying to prevent the birth of more babies with thal major. It's not specified in the article so I'm not sure if the success also includes preventing the birth of babies with thal minor. I hope not. I also thought it was a rather ironic thing to write, after the article showed that thal major is a condition that the girl could manage.

This article struck a chord with me because my first pre-natal blood test indicated that I had to be re-tested, to check if I was a thal carrier. The husband was to 'stand by' to be tested if I was indeed a carrier. You can imagine the 'excitement' that created among family and relatives. They told me that they hadn't ever even heard of thal, so I couldn't possibly be a carrier. Anyway, it turned out that I'm not one, and it was some 'abnormal' blood cells, which the doctor said were nothing to worry about, that had showed up in my initial test.

And what really struck me then was the conversation I had with the nurse who was doing my repeat blood test. I can't quote verbatim (too long ago; can't remember the exact words that transpired), but this is the gist of what happened:

She gave me a brief explanation of what thal was.

Just to see what she would say, I asked her what would happen if the tests indicated that both of us were carriers.

Her answer: we will counsel you.

Me: what do you mean by 'counsel'?

Her: we will advise you about what to do.

Me: what advice? you know, it won't make any difference to us. we've already made up our minds, whatever the test results are.

Her: we will advise you but if you decide otherwise, we can't do anything.

Me: i see...

I was APPALLED. She might as well have said, 'if you decide to keep the baby, that's your problem.' I have this growing baby in me and you tell me that I might be wrong to keep it?

As I said, I was declared 'normal' (hope the doctor is right about those 'abnormal' blood cells of mine). But I remain appalled at this rather callous attitude towards life. I know dealing with thal major is really tough, as is dealing with many other conditions considered not 'normal' but I'm not sure it's a good reason to 'advise' people to terminate pregnancies. Granted, the nurse didn't actually use the words 'terminate your pregnancy' or 'have an abortion', but what else could she have meant? And to this day, it is still seen as 'success' to 'counsel' people 'appropriately' after their thal blood tests.

The girl featured in the article said that her Londoner step-father is also a thal major and she has met other thal majors in London: 'They are mature adults and they have fun, live their lives in a carefree way and yet take care of themselves.'

Not so far away, there is also the thal society in Malaysia.

So you see, when you find out something is not 'normal', it doesn't mean you have to end your pregnancy.

'normal' after all

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