Thursday, 25 February 2010

1 in 150

I'm not one who likes statistics.
Especially when it comes to medical ones. Maybe it's because they disregard the individual, the way that every individual case of an illness, a risk etc is different, and statistics are averaging and will not necessarily apply to you.

A couple of weeks ago, I got a letter from the hospital inviting me to discuss screening options for Down's Syndrome as my age means that I have an increased risk of carrying a baby with Down's Syndrome. The letter threw me into emotional turmoil. I really didn't know what to do. Should I have tests? What then? Would I have a termination? What's the point of tests if I wouldn't have a termination? To be prepared? Can you really be prepared?

Many of my friends have had amnios. Others have refused all tests. Here in my NHS area, a nuchal translucency test is not offered, and the blood test in itself is pretty useless to really assess your risk of carrying a baby with Down's Syndrome. I considered having a nuchal fold scan privately, at least with the combined non-invasive tests there is a better assessment of risk which would then maybe help the decision to have an amnio or not.

Yet this plan didn't answer the real question: would I actually ever agree to have an amnio, considering the 1 in 100 risk of miscarriage it carries? And what would I do if the result was positive for Down's Syndrome.?

I'm not a person who copes easily. I like to be in control. I know I'd be overwhelmed by having to care for a disabled child, it would throw my life into turmoil. I wouldn't choose that life. Then the realisation came that life has taught me that there is ultimately no control over what happens. There's a lot you can't prepare for, so why is so much emphasis put on preparing or testing for Down's Syndrome? Maybe because you can? Was I not considering invasive tests because I'd been invited to discuss them, when before I had thought about it but would not have requested one?

I did go to the appointment that was offered. There wasn't much information that I didn't already know, but I do like to speak to people, it makes my mind clearer. Apparently, my risk of carrying a child with Down's is 1 in 150. When the risk of miscarriage was explained to me (which I knew), I burst into tears. Instinctively I knew that this is not a risk I am prepared to take. 1 in 100. It doesn't sound much. It was the same risk that my mother's operation carried. And she passed away. 1 in 100 is one in a hundred too many for me.

What I did instead is read up on Down's Syndrome and chat to some people online who have a child with Down's Syndrome. It made it real but also less frightening. Again, 1 in 150 is a real possibility and I'm not going to brush this away light heartedly.

Statistics also tell me that 93% of pregnant women who know they carry a child with Down's Syndrome have a termination. That number too is a powerful statement, one that doesn't let me brush away worries lightly. Because I'm sure that a termination doesn't come lightly for anyone behind the statistics.

My name is still down for blood tests. This may sound odd, because after all, if I'm not prepared to have invasive tests, why would I want any tests? Well, last time the blood tests came back good, and it really and truly made me stop my constant worries. That official label of having a low risk pregnancy, a label I could look at every day in my notes, was priceless. And don't blame me for hoping for it this time.


Very Bored in Catalunya said...

I wouldn't blame you for a second, take whatever tests you feel will put your mind at rest. Pregnancy is such a stressful time when you've suffered miscarriages so anything that can make it all easier is very much worth it. I'll have everything crossed for you when you have your blood tests. xx

TheMadHouse said...

I think it is so hard a decision to make. We opted not to have any tests at all apart from a 20 week scan with the minimads, partly due to the fact that Maxi took 10 years work to get here and also due to the fact my MIL worked as a special school teacher and she would never have fogiven us if we had a termination due to disability.

But I can understand that everyone is different.

smashedpea said...

Good luck! I remember how tough those decisions are, but maybe the best we can do is doing what feels right and taking it one step at a time.

Mwa said...

This is a tough one. In Belgium, they do the nuchal fold for everyone. Then you have the option of the blood test. In my last two pregnancies, I just had the nuchal fold and left it at that. This time I had the blood test. If that comes back with a higher than 1 in 250 chance, you are invited for the amnio.

I decided not to think too much or make any decisions until I got more information. Luckily, the blood test was fine, and I never even had to make the decision.

I honestly don't know what I would have done. I think I may have taken the amnio, just for information. But a termination seems an awfully big decision that late in a pregnancy. I can understand why people do it, though. I just don't know.

Cave Mother said...

Oh it's so hard. I didn't even have the blood test to determine the risk of me carrying a Down's baby. We just decided that we wouldn't terminate anyway, so there was no point. But it's a decision that has to be made afresh for every pregnancy - I understand why some people would have an amnio, and some wouldn't. I do wish you luck with your blood tests, and I hope they settle your fears.

South Side Yarns said...

It is so difficult. I'm just putting down my thoughts for the othe commentators if of any interest.

I - as you know - had an amnio (tests for many other chromosomal problems not just Down's) both pregnancies because of family history and my age (36 with Bun, 40 with Bunny). I just could not rely on any of the noninvasive tests as they weren't anywhere near conclusive of course - my sister had a 'low risk' bloodtest result but her little boy did in fact have Down's, also a major heart problem the scan should have picked up, and he is severely autistic and physically disabled too.

I'm not sure if I could have gone through with a termination because of disability (though that was the implicit agreement between us) but I did want to know and - for me - 1 in a 100 was a low risk and one I was willing to take in order to make decisions or at least prepare for the kind of life my sister has. She of course does cope - she has to - and loves her little boy by the way!

But you are completely right we can't control everything (or anything maybe!) For me the whole abortion debate has to be based on mother and baby's emotional and physical health, but what we consider detrimental to some of those apects is a very personal choice.

As I also told you I have know numerous mums to have amnios in the past few years and nobody has a miscarriage but even more hopeful was that ALL of the babies screened were 100% healthy :-)

So here is to a happy, healthy pregnancy and a second beautiful, healthy child. J X

cartside said...

J, thanks for pointing out that the screening isn't just for Down's. I think that's a really important point, and yet the hospital invited me to discuss Down's screening specifically. I'm not sure if I agree with this simplification, because it just means all I think about is Down's.

It's a shame that in Glasgow they don't offer nuchal fold scans - it's offered in most areas on the NHS. Yes, I could have gone private, but didn't. At least the combination of the two gives you some indication, and you can then think about having an amnio, rather than the blood tests which have a significant rate of false positives and negatives.

zooarchaeologist said...

I felt the same as you and so I went for the blood tests and hoped. Nuchal fold scans are private here too. Its such a dilemma.
However, I do know at least one Downs person who leads a very full and independent life and so I think that has had a very positive influence on how I might feel with the diagnosis anyhow.
I'm not much help, although I do feel that mothers often 'know' when something isn't quite right anyhow.



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