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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Giving in to hope

DSC_0049My friend has a gorgeous little shop on the High Street selling, among other things, beautiful hand-painted Christmas baubles. The other day, I called in and bought three. One for each of my children.

Not just because she told me they were on three-for-two (an offer I suspect is not extended to everyone), but because, whatever happens in the New Year, I will have three children to celebrate this Christmas.

Last week we had an ultrasound scan and an MRI scan. The results were positive (everything looks perfectly normal), but not conclusive (none of the doctors would commit themselves to saying it would stay that way). Book another scan, wait another month.

How should I react? I still want to protect myself, to prepare for the worst. But, as my mum says, there also has to come a point at which I allow myself to hope for the best. And what better time for a glimmer of hope than Christmas?

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Wrestling

I feel a little bit naughty. I’m on my own – completely on my own – on my way to London, in the middle of the night. It’s okay, it’s legitimate. Hubby has given me a two-day pass to go to the Mumsnet “Blogfest.”

I also feel a little bit guilty. Like many mums, I don’t feel I have a right to a life away from my family. I feel pathetically grateful to my partner for granting me some time away. I’m not sure I’ll even enjoy it all that much although I know I should make the most of it and let my hair down!

I certainly feel a bit of a fraud. I’m not a great blogger. I’m not even a very regular blogger. And despite my best attempts to look professional for tomorrow, to be honest I look a complete mess. I’m wearing my “trendy” (maybe 25 years ago) ripped jeans and a smart velvet jacket that is too tight over my bump, shrouded for the first cold night of the Scots winter in a down jacket (that also fails to meet in the middle), bright pink gloves and a straggly bobble hat. I’d started to pack into a smart leather overnight bag but it seems – once a mum always a mum – my desire to cover all eventualities necessitated a transfer to a larger, grubbier backpack, water bottle peeking out one side, umbrella the other. There are still traces of poster paint on my arms from this afternoon’s wet weather activity. Add to this a night in a shared cabin on the sleeper train and I’ll be surprised if they let me into the smart glass conference centre at all.

Anyway, I digress. As you can guess, I don’t often get time on my own to think. In fact, pretty much the only time I do get is when I’m picking up or dropping off a car. We don’t own a car; whenever I have to ferry the kids somewhere I borrow one (a car, not a kid) from the local car club. This entails a certain amount of logistical juggling since (I might be supermum but) even I can’t transport two children and two car seats across town to where the nearest club car is parked. So usually, the night before any excursion, I wait until my husband is home from work and the children are in bed, then I head out into the dark, check into the car, drive back and park it outside our house until the morning.

Except I don’t. Not directly. What actually happens is I walk over to the car, check into it, adjust the seat and the mirrors, and then I sit. And think. Wrestle might be a more appropriate term. Where shall I drive to?

Shall I go straight home, maybe be in time to read one last bedtime story, then hunker down on the sofa with some mindless telly and try to forget, for another few hours, what I might have to do in ten days’ time?

Or shall I turn the other way, head out into the dark, along the coast or across the hills, it doesn’t matter, anywhere I can hide away and protect my baby. I know my other kids would be safe. They’ve got warm cosy beds and a doting father who would keep them fed and clothed and happy. They’d miss me. I’d miss them – and my husband – like crazy. But it’s hard to resist the desire to run. I’m constantly in “fight or flight” mode. My body knows my baby is under attack.

You see none of the scans ever brings good news. At best they say “wait and see.” At worst, it will be game over for this baby. I don’t dread having another disabled child – far from it. I would love and nurture it as I have been doing for the last six months. I dread what I have promised to do to that child. To sacrifice it for the sake of the rest of my family. If I don’t go to the scans, I can’t keep that promise. And now there are only ten days left until the next one.

I tried to talk about my fears on a Facebook support group. About how I hate the waiting so much I would almost rather have the abortion now than wait for the next scan, and then the next. How I feel I don’t deserve to have a healthy baby anyway, because of what I’ve agreed to. How every afternoon, when Jackie is at nursery, I sit at the kitchen table and cry because I feel so trapped I don’t know what else to do. How I’m becoming a shadow of a mother and a wife because I’m too tired from battling my own thoughts to do anything other than watch Cbeebies. When the first comment came back: “How dare you talk like that? Don’t you know how lucky you are? Pull yourself together…” I deleted the post in shame. They’re right, of course. I have two lovely children. I have a fertile body that has made another. I have the luxury of choice. I have made my bed and I must lie in it.

I tried to talk to my husband about adoption. He says we can’t, because once we see the baby we will love it and want to keep it. He’s right, of course. But me, I’ve already “seen” this baby with my body. For six months I’ve unwittingly got to know it. I know the shape of its head. I know where it’s feet are. I know when it likes to rest and when it likes to have a good old rummage around. Despite myself, I have an inkling what sex it is and what I’d like to call it.

I never do it. Every time – I’ve lost count of how many – I blink, turn the radio up loud, and turn the wheel for home. Back to my warm house and my loving husband and my beautiful children. I can’t risk all that for this little soul that I carry with me everywhere. I can’t tear the rest of my family apart. On Sunday I will get back on the train, the day train this time, and be home in time for tea.

Thoughts from no-man’s-land

Last week, we had our twenty week scan. Everything looked normal, as we knew it would: Benjamin looked entirely normal at twenty weeks. That didn’t stop me rushing home and googling the baby’s head circumference until I found a graph that put it on the 60th percentile. That’s got to be good, right?

So now we are into that no-man’s-land, the period between 20 and 38 weeks during which we know something happened in Benjamin’s brain (or rather, something didn’t happen that should have). Within eighteen weeks we will know whether to expect a healthy baby, or no baby at all.

I’ve tried to avoid all the ‘pregnancy propaganda.’ I haven’t signed up to any of the weekly emails telling me “your baby is now the size of a butternut squash;” “this week you should be choosing wallpaper for the nursery;” but I am still bombarded with unbearably positive images of pregnancy. At my weekly pilates class we are encouraged to “hug our abdominal muscles around our baby.” The midwife gives me leaflets about breastfeeding, talking to the bump, singing to it even, getting to know the baby before it is born. And why shouldn’t she? Not many women are placed in the no-man’s-land. You either can’t wait to meet your baby, or you do something about it pretty damn quick.

Contradiction is my constant companion. Cognitive dissonance, if you will. It is increasingly obvious that I am pregnant; still I spend my energy trying to ignore the fact. I know that there is every chance this is a healthy baby; I fear what will have to happen if it isn’t. I love my son dearly, I believe that he is happy and that his life has value; but I cannot receive another like him into my family. I grieve with friends who have lost children; yet I know that if my own child doesn’t make it, it will be my own doing and I will have no right to grieve.

And so, as my energy slowly returns, I try to fill my time, to distract myself from this mental tug-of-war. Not with choosing baby names, sorting tiny vests, writing a birth plan. With working and researching and writing angry letters to the council about school transport. With coffee mornings and playdates and planning Halloween costumes and ripping weeds out of the garden. But then something will happen to stop me in my tracks. I cannot end this post without reference to a dear lady, who was good enough to reach out to me when I first started to share my hopes and fears for this pregnancy. She was also pregnant, with near-enough the same due date as me. Today she learned that she has lost her baby.

It’s illogical, of course. I am tired and shocked and hormonal and alone. But I can’t help but wonder if this is a sign: a message that life is fragile, and precious? Some days, perhaps I feel the baby kicking, I am filled with love and wonder and hope for this new life. Others, like today, it is as if I am stuck on a hurtling freight train, moving inexorably towards an abortion, and I cannot get off. All my motherly instincts are beating at the doors but I Can’t. Get. Off.

Fortune favours the brave?

In retrospect, I shouldn’t have looked at the twelve-week scan. I shouldn’t have marvelled at its perfect, 6 cm long little body, its stomach, bladder and beating heart, its tiny vertebrae, arms and legs. I shouldn’t have watched it leaping summersaults in my belly. It might then have been easier not to view it as a little life, as a baby.

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Because we decided, before it was even conceived, that if this baby has the same condition as Benjamin, we will terminate the pregnancy, however far gone that pregnancy is.

I’m not writing this to shock, or to hurt. I apologise if it seems brutal, particularly to those who consider themselves disabled, those who have lost children, and those who have struggled to conceive. Please let me explain. I didn’t go into this because I was comfortable with a one-in-four chance that I will have to abort my baby. I went into this because the risk is low and the possible gains are great. I went into this because I don’t wholly believe the geneticists’ one-in-four. Some combination of intuition, research, and my own knowledge of genetics tells me that Benjamin’s condition is a one-off, de novo mutation. And, I went into this because some crazy, half-imagined, half-hoped, half-understood feeling tells me that if only we are bold enough to jump, God will honour our trust by not letting us fall. That fortune favours the brave.

None of that makes it any easier to relax now that we have jumped. I am haunted by the possibility that I will have to have a late term abortion. And if necessary, I will do it, I won’t go back on our decision. I still believe that abortion – at any stage of pregnancy – is killing. But I think I could do it to give Jackie and Benjamin a better life. The fact is, that in our society, being disabled is a disadvantage and having a disabled sibling is a disadvantage. If I can limit that disadvantage for Jackie and Benjamin, I will.

I wonder if this makes me a hypocrite. If I could abort this child, why couldn’t I have aborted Benjamin and saved us all this torment? My answer is that this is not Benjamin. It is a different pregnancy, under different circumstances, with different information. Since we’ve had Benjamin, I’ve met women who’ve aborted unborn babies with fairly treatable disabilities, and women who’ve continued with a pregnancy that promised serious disability. I wouldn’t dare to judge any of these women, and I try hard not to judge myself. Every situation is unique and can never be fully understood from the outside. The only thing I know is that the parents who face these decisions, whatever they choose, do not choose lightly; they choose painstakingly, bravely, honestly, in good faith, and through love.

And what does this mean of my love for Benjamin? If I would abort another like him? I have loved Benjamin since the day he was conceived and my love for him grows daily, as it does for my daughter. And, no matter how much I try to shield myself from it, the same is true for the new child in my womb. If we lose this gamble, I will grieve this child as a loved one.

Plenty of people are willing to voice their opinions on abortion, for and against. But the actual decision – either way – is rightly very private. However, this leaves the parents, perhaps especially the mother, open to a whole lot of hidden guilt, shame and doubt. I feel this about Benjamin and I will feel it for my third child, whatever the outcome of this pregnancy. I hope that by being more open with our experiences we can begin to support these parents. So, I open our own choice up for criticism. I don’t expect everyone to understand or agree. You may think us heartless, selfish, or worse, but I know that the path we’ve chosen is right for our family. I will share this story as it happens, not warped by mis-telling, nor airbrushed with hindsight. We didn’t ask to be making life-and-death decisions and we’re not intellectually or emotionally equipped to do so. We’re just doing the best we can.

Gambling

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

I haven’t blogged for several weeks. I couldn’t. My mind and body have been consumed with something that I – and my family – weren’t yet ready to share.

We have decided to try for another baby. Some might say this was a brave decision. I’m sure others would call it reckless, selfish, … crazy. It surprised me, actually. I thought we would continue to skirt around the issue until it was too late. Or, I thought we would play it safe. I thought one of us, at least, was naturally risk averse, and the other wouldn’t push them. Turns out, on matters of life and death, we are both gamblers.

We agreed that the benefits a ‘normal’ third child would bring to our family, and particularly our existing children, were so great as to make it worth the risk, the one-in-four risk, that that child will not be ‘normal.’ We did our research: we know that with no genetic diagnosis there will be no early way to test. We know that in all likelihood it will be 32 weeks before any abnormalities can be detected. We know that it might be 38 weeks before we can be even fairly certain if the baby does not have the same condition as Benjamin.

And now here I am, carrying that baby, for as long as it takes and hopefully longer.

It can be lonely, being pregnant. Those first twelve weeks when it’s just your little secret aren’t so much fun the third time around. You’re too tired to go out for coffee (you shouldn’t be drinking coffee anyway) and you’re in bed by 9pm, so the majority of your conversations are limited to a non-verbal baby and a three-year old who doesn’t understand why you’ve always got your head down toilet.

And if the whole pregnancy is to be overshadowed by fear, fear of that looming one-in-four chance, what then? You don’t like to talk to your family, to get their hopes up over a baby that may never be. You hide away from your friends – the fewer people see your growing bump, the fewer people you will have to explain to if that bump disappears before its time. You feel guilty among the wonderful online community of other mums of undiagnosed children, because you know many of them have faced the same fears and made the equally brave decision not to have another child; the last thing you want to do is reopen their old wounds.

I am blessed to have a fantastic, caring husband with whom I can share everything and be totally honest, and who is with me one hundred percent in this gamble. I am grateful to have a supportive obstetrician. I know that she knew that we would take the risk: her parting words at our pre-conception meeting were, “I’ll see you back here when you are pregnant.” I am also fortunate to have been able to talk to the rector of my local church. It is a great comfort to know his thoughts and prayers are with me. And now, I am pleased to be sharing our hopeful (I dare not say joyous) news with you. I would love to have your thoughts and prayers too.