Risk

Written 13th December, 2014.

Last Tuesday we had what Professor Brosens described as a ‘highly reassuring’ scan. We are now over 11.4 weeks and the baby was leaping and dancing about, kicking and hiccoughing. As I commented to the consultant who scanned me, we’ve never seen one that big before. Every good scan means that it is just a little bit more likely to happen this time. The odds are, as you might say, increasingly are in our favour. But can we relax? Of course not.

Next Tuesday afternoon is The Scan. The Big One. 12 weeks. And we’ve been there before, and it was not a happy experience. Although we’re beginning to turn our minds to the possibility of there being a chicken, we’re still not quite ready to actually count it.

The 12 week scan comes with tests (http://www.nhs.uk/conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx#close) which we both (think we) want (great if the results are good) and don’t want (what if they’re bad?). The consultant gave us a bit of a talking to to ensure the implications of getting those test results. We have been through so much already. Have we considered what the possibility of high risk results might mean for us? She hastily assured us that she had not noticed anything on the scan that made her mention it, in particular, but that she felt that too many people have the standard tests without really thinking carefully about the implications of the results. The first thing to do is to realise that risk is not diagnosis. Lots of people, apparently, don’t understand the difference. So a risk of 1:150 is considered ‘high’, but, of that, it means that 1 baby in 150 with those results would have a condition such as Down’s Syndrome. 149 babies would be fine. It’s still pretty scary, though. We’ve been through so much to get to this point. Would we make a choice to end it? No. I don’t believe that I would even consent to further invasive tests like amniocentesis because of the 1% risk of miscarriage. But I think that knowledge is better than no knowledge, so we plan to go ahead with the screenig next week.

The odds are in our favour (mostly – they were more in our favour three years ago when we set out on this journey, but what can you do about time?). How much more can we take? Could we ever do it again, even if it works out? We always thought we’d have more than one child, but it’s been such a a struggle to get to this point, and I’m not getting any younger, and the risks will only increase.

And I know too many stories. My own sad ones, and the sad heartbreak of other women whom have been kind enough to support me on this journey. You think what I’ve been through is bad? I know stories of recurrent miscarriage that break my heart and chill my blood. No-one can keep their innocence about pregnancy after this.

At the end of The Lord of the Rings: Return of the King (the film, sorry, not got my literary hat on this morning!), Frodo says: “How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand there is no going back? There are some things time cannot mend. Some hurts that go too deep that have taken hold.” We did go back and are in the midst of having another go, but how many times can anyone do this? What has happened to us will stay with us forever. It has made us, in a really fundamental way, different than we would otherwise have been. What’s the cost? ££££ on counselling and cognitive hypnotherapy to try to repair the damage done by post traumatic medical shock. I still can’t look at other people’s 12 week scans on facebook. I think I could be The Old Woman Who Lived In A Shoe, with so many children I didn’t know what to do, and a babybomb scan photo would still turn my blood to ice. This is a terrible learned behavour. I feel sad that I seem to be stuck with it.

What else can I say? Wish us all luck for Tuesday.

Advertisements

What would you do?

I know that I live in a glass house. Therefore, I probably shouldn’t throw any stones. However, sometimes we read of and hear about things in the world that don’t lie well in our moral landscape. We’d like to think that we wouldn’t have done this, or we would have done that, had the choice been ours to make.

I’m not talking, here, about the terrible conflicts that we see going on everyday (I would need a different blog to adequately write about that). Rather, the ‘luxury’ of the lifestyle choice that we are lucky enough to have, and the great moral responsibility that this necessarily affords us. I say necessarily, because, as Spiderman famously said, ‘with great power, comes great responsibility’. Modern technology, in particular, ultrasound screening and neonatal testing gives us great power, because it gives us knowledge. It also gives us great responsibility, because we then need to act on that knowledge. Those actions are usually considered moral in nature, and therefore, we judge them to be good or bad, right or wrong. The scanning isn’t bad, the knowledge, although possibly unwelcome isn’t ‘bad’, but, in the absence of a universally agreed absolute moral framework, the choices people make are the subject of moral judgement.

I am referring, of course, to the case of the Australian couple who have taken the twin, but not the Downs syndrome sibling from the surrogate Thai mother, which has been in the news this week. Australian couple abandon surrogate Down’s Syndrome baby (BBC 2.8.14)

I have had so many ERPCs over the years to remove my deceased babies, and I remember sobbing over the ‘phone to my Dad on the eve of the first one that I didn’t know how someone could go into that operating room knowing that their baby was still alive and go through with a termination. And that was true. At that moment in time, I really could not have understood it, I was deep in shock and grief. Why would anyone do this voluntarily? That is not to say that I did not intellectually understand that some women (and girls) find them selves in terrible situations and feel that there is no other realistic option. But at that moment, I could not have empathised with it.

However, since then I’ve lost a daughter to Turner Syndrome, which kills 97% of girls who have it (it’s a missing chromosome) but 3% do survive and can live up to about 3 years of age (I think the oldest might have lived to 8). It really got me thinking about what I would (could) do if I knew that the baby had a life limiting condition. I don’t consider Downs to be necessarily life limiting, I mean the kind of condition that leads to a painful death shortly after birth, like Anencephaly (where the brain or skull are seriously malformed or absent), or when another organ or body part is missing or seriously malformed (like the liver or diaphragm, which I have heard of happening). I really don’t know what I would do, in that case. In a way, I was ‘lucky’ that my Turner baby died and I didn’t have to make that choice, but I can’t pass judgement on those who would terminate for those kinds of reasons.

Some also consider their existing children who they don’t want to make ‘carers’ for the long term (although aren’t we all carers in families at some point, so I have slightly less sympathy with that position). I have not walked a mile in their shoes. The instinct to protect your living children, the ones that are already hare, for whom you have such hopes, and in whom you see such amazing potential, is a powerful one.

The problem is that there is a slippery slope, and once you allow/permit some terminations, it can be seen as more difficult to draw the line. And no-one would want all the problems that go with back-street abortions etc.

Is scanning per se a good thing, since it gives us this kind of information on which to make these kinds of decisions? Female abortion (and abandonment and infanticide) are big problems in India and China because of the ability to scan the unborn. More and more ‘defects’ can be picked up on scans and tests, and there is an argument that, if you can prevent people from being born with these problems, you are doing them a favour. But if this is used to justify terminations for cosmetic or ‘non-life limiting’ conditions, or even gender, have we abused the technology? If so, ought it be used at all? So, ‘Boo’ to scans!

Conversely, we are the recipients of reassurance scans, which Prof Lesley Regan (St Mary’s RMC clinic) and others do say helps with preventing miscarriage, because TLC of RMC sufferers does seem to have a positive impact, anecdotally, at least. So, ‘Yay’ to scans!

Some Christians (and I am sure other faiths and Humanists, and atheists – should have just said people…) such as Joanna Jepson argue that, if we select for perfection in the womb, we are sending a message to the living disabled that they are ‘worth less’ than ‘normal’ people. (I hesitate to use the word ‘normal’, as, really, who is ‘normal’ anyway?)

The fact remains that people make choices based on their personal circumstances at the time. Sometimes they are selfish, and sometimes they are frightened and oftentimes they are wrong in our eyes. Most people decide with their hearts, not their heads, anyway, so are they really making rational moral choices? (Philosophical can open, ethical worms everywhere.) But I can only look after my own moral choices, and, since I can’t say what I would do in any given situation, it is hard for me to condemn others.

I would agree, however, that, on the face of it, this Australian couple appear to have made a selfish choice, which I would like to hope that I would not have made. The question is, is it always morally wrong to be selfish? I can’t answer that.

No stones, then. Maybe just some handfuls of sand to draw attention to the debate, and leave them, and their consciences, to it.