A world without…

A week ago I – along with at least 50% of people on my Twitter feed, it appears – watched Sally Phillips’ emotive documentary A World Without Downs?, exploring the possible outcomes of a new, non-invasive prenatal test (NIPT) for Downs Syndrome. The test allows risk-free, early prenatal diagnosis of almost 100% of Downs Syndrome babies. It is sadly no surprise that the vast majority of parents, who discover their unborn baby has Downs Syndrome, choose to abort. In countries where NIPT is already routine, that means 100% of Downs babies are ‘screened out.’ When the NIPT is introduced on the NHS, Downs could be eradicated in the UK as effectively as smallpox. A world without Downs is a very real possibility.

Although I have little experience of Downs Syndrome, the programme stirred up a host of not-so-deeply buried emotions. Because we also, thanks to non-invasive testing, were given the knowledge that our child, in utero, would be severely disabled. We were given the choice to ‘screen him out.’

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In our case, despite the prognosis that Benjamin would be much more severely disabled than most of the Downs community, we chose to continue the pregnancy. It was an unusual choice: a choice that at least some of the people Phillips so bravely interviewed would consider anathema. Yet, almost three years down the line, having out-survived the dire predictions made for him, I remain convinced that our choice was the right one, for Benjamin, for us, and for everyone.

In this respect, our experience mirrors Phillips’: the quality of Benjamin’s life has, so far, exceeded the prognosis; for Phillips the lived experience of Downs does not match the medical risks associated with having an extra copy of chromosome 21. Therefore, she argues, the medical facts alone should not be used to justify, promote or allow the termination of Downs pregnancies; the truth of the lives of the Downs community – their achievements, their integration, their quality of life – must also be considered.

However, while this argument may hold for her cherry-picked examples of high-achieving, articulate, much-loved people with Downs Syndrome, in other cases the worst predicted scenario may in fact come true (see, for example, this headline-hitting story from a couple of years ago). Nor may Phillips’ experience apply to the host of other, less cuddly, genetic conditions that we’ll be able to screen for over the next few years: conditions whose bearers may be less able, less sociable, less comfortable, in more pain, and requiring greater levels of intervention. This is not just about Downs! Downs is the thin end of the wedge, yes, but we need a much stronger, less subjective argument to avoid slipping faster and faster towards the eugenics of the thick end. I didn’t choose to keep Benjamin because I thought the doctors were wrong; I chose to keep him because I loved him even if they were right.

The fact is, as Phillips makes clear, choice is not always all it’s cracked up to be. In fact, choice without information is no choice at all. Parents are called upon to make a life or death choice, yet they are sometimes the least informed party. They have no medical background, no knowledge of what it is like to parent a disabled child in todays’ society, or of what it is like to be disabled. Caught in the moment, they cannot get their heads around hospices and trust funds, community healthcare and special schools, motability and carer’s allowance. They rely upon the medical profession, as their only point of contact, to provide all their information. With the clock ticking towards full term, they may be rushed into a decision before they can research it from all angles. A decision that – either way – they will live with for the rest of their lives.

Choice without information is no choice at all, says Phillips. But neither is choice without support. Because choice almost inevitably leads to hindsight, leads to ‘what if?,’ leads to guilt. The climate in which we made our choice left us (me) with a huge legacy of guilt.  Because although it was a joint choice – and to my dear husband I am hugely grateful that we made it together and bear joint responsibility – at the same time it was my choice. I was the one who had borne Benjamin for eight and a half months. I was the only one who knew him. It would be my body to birth him, dead or alive; my signature on the consent forms; my choice to condemn the rest of my family to a life they hadn’t planned or chosen.

I feel the guilt every time my husband has to take time off work to come to yet another multidisciplinary consultation. I feel guilty every time Jackie has to spend the afternoon colouring in, in A&E. I feel guilty for the weeks spent juggling home life with hospital. I feel guilty every time Benjamin is in pain. I feel guilty when we spend £750 on a new base for his wheelchair that could have gone on a new carpet for Jackie’s room. I feel guilty when we can’t climb a mountain together. I feel guilty when I spend the afternoon making purees for Benjamin instead of cupcakes with Jackie. I feel guilty when Caitlin needs a cuddle but Benjamin needs my immediate care.

Of course ‘mummy guilt’ or as Google insists on rephrasing it for me, ‘mommy guilt’ is far from my unique prerogative. Guilt for working, guilt for not working, guilt for letting them cry, guilt for spoiling them, guilt for using disposable nappies, guilt for formula-feeding, guilt for feeding them junk, letting them watch too much TV, spending too much time on your phone, not noticing when they smack another child in the head, not noticing when they get smacked in the head… But this guilt runs deeper. Whichever path they choose, parents like us make a life-or-death decision: to end a life, or to forever change the lives of those around them.

The brilliant, honest and thoughtful blogger Orange this way admitted in a post earlier this year that ‘I would have mistakenly and quite offensively believed that life with a disabled child would be tragic and terrifying, joyless, isolating and punishing, and that the hardships would far outweigh love.’ When Benjamin’s disabilities came to light, I felt the same, and those feelings were reiterated by the few people around us with whom we shared that nightmarish news. I felt we had to choose between a life of freedom without Benjamin or a life of hardship with him. Hardship not just for the mother, but the father, siblings and extended family too. In my journey with Benjamin I have come to know several parents who faced a similar choice at 12, 20, 30+ weeks pregnant. Some decided to terminate, some to continue. Our paths since that choice may have diverged but one thing we all share: the weight of guilt.

Don’t get me wrong. I don’t think we made the wrong decision, not at all. I don’t wish we had chosen to abort Benjamin. I don’t wish he had never been born or even never conceived. He is my Benjamin, my brave, beautiful, brown-eyed boy, and I love him with all my heart. But I do wish, with that same heart, that we hadn’t faced that choice.

I don’t blame the doctors, who were only doing their job, giving us the information they had and telling us the rights that we had. I don’t blame the midwife who sent me for that fateful 38-week scan. But I wish we hadn’t faced that choice.

The choice, the decision, and the guilt, threatened to drive a wedge through the heart of our family. Between myself and my husband; myself and my daughters, who will live a very different life to the one we planned for them; myself and the family members who weighed in with (well-meaning) advice and opinion. I wish we hadn’t faced that choice. And NIPT places such a choice in the hands of hundreds more parents, each year, in the UK alone.

I am not asking that we reverse or ignore the amazing advances that scientists and medics have worked so hard for. I am not arguing against screening. In the right hands, prenatal screening can provide valuable information. For Benjamin, it meant that the medical team were thoroughly prepared for his arrival and ready to hit the ground running. Not for us the months of fighting that so many SN parents face, to be taken seriously, and to get much needed treatment and support. From the very start we had nurses, paediatricians, dieticians, physiotherapists, palliative care specialists, neurologists, geneticists, and more, queuing up to see Benjamin and to help him be the best that he can be.

What I am asking for is a society that makes the choice less punishing; a society that doesn’t place parents between a rock and a hard place; that doesn’t make them choose between life for their unborn child and life chances for their other children. I’m asking for a society where life becomes the easy and obvious choice: a society of fairness, accessibility and tolerance.

And until we get that society, I am begging for support. Support to parents at the time of screening – provided not just by doctors but counsellors, peer supporters, palliative care specialists, social workers, family and friends. Non-judgemental, non-directed, support. Space to ask questions and have them answered; help with work, cooking, housework and childcare while they grapple with their choice. Reassurance that the choice they will make is the right one for them, and that no-one needs to feel guilty. And support afterwards, to heal the psychological scars that will inevitably left by such a choice, by simply being a normal, lay person thrown into making a life and death decision. One good place to start would be with more Diana Children’s Nurses, who were such a support to us while I was pregnant with Caitlin. If only they had been there during my pregnancy with Benjamin too.

If you haven’t already, I urge you to watch A World Without Downs? It raises important questions and starts an important debate. But it doesn’t go far enough. Pitting the ‘Downs community’ against – well, against whom? Scientists? Politicians? Doctors? Mothers? – in this way may in fact make it more acceptable to terminate pregnancies with worse prognoses. The fact is we are all a community, and all part of a continuum of humanity, all able and disabled in different ways. If we do begin to provide fuller information about life with genetic conditions, as Phillips hopes, are we then more justified in screening out the worst? And who chooses what constitutes ‘the worst’? Where do we, should we, draw the line between someone who is a valuable member of society and someone who is a drain on it? Who chooses who has a right to life? Should we outlaw the choice itself? Or should we build a society where life becomes the easier choice to make? And who will be there to pick up the pieces of those on whom that choice is placed, whatever they decide?

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