The Disability Abortion Lie – when choice seems like no choice

It’s easy to assume that the moral dilemma of whether to abort your unborn baby that you've learned has a disability, is confined to a shouty debate between pro-choicers on the right to end a pregnancy at any stage, for any reason, and equally vociferous pro-lifers camped outside abortion clinics with their gory billboard campaigns designed to shock and scare.

But when it directly affects you, when you live through what all the spin really means, when your heart has ached with confusion, then those angry conflicting arguments become nothing more than so much white noise.

As with all complicated moral and emotional issues, the reality, the experiences and beliefs of the masses, the experience of the common woman, lies somewhere in the vast stretch of thinking that falls between the two peaks. And yes, it's complicated.

I feel qualified to add my personal comments to this topic because, when pregnant with our second child I too clearly recall my fear of ‘imperfection’ of any ‘less than healthy’ foetus.

I naïvely opted for initial screening - which was clear - for ‘peace of mind’, arrogantly certain that all would be well. I refused more invasive amniocentesis for fear of the risks ‘to a healthy baby’, following five miscarriages. I declared that I didn’t mind the sex of the baby ‘as long as it was healthy’. I also clearly recall a conversation about definitely not thinking I could cope with a child with Down’s syndrome. Termination was on the agenda for discussion for us at that point.

My choice of words back then echoed those that trip so easily and unthinkingly from almost every prospective mother’s tongue. They imply that a healthy baby’s life is naturally worth more than one with medical complications, worse still, one who may simply look or learn or live a little differently. That pregnancy is conditional on an all-clear result at a 20 week scan, until which point we traditionally keep it under wraps.

Natalia was born at home, silent and blue, the dash to the Neonatal Intensive Care unit revealing a diagnosis of Down’s syndrome, along with two small holes in her heart. The words punched through my soul. The bottom of my world dropped from beneath me and dark fear, worry and shock rushed in; I hadn’t signed up for this! Why me?

But seven years on, having walked the path I was so adamant that I didn’t want to take, I now know why me.

DSC_8053

For me, the realities of Down’s syndrome today are of the independence that is possible and the huge benefits that we all reap from being inclusive and accepting different ways of living. Most of all it is understanding what those with learning disabilities contribute huge amounts to their communities.

Natalia is simply our daughter, a cake lover, swimming addict and annoying little sister. Our lived reality doesn’t even begin to overlap the stereotyped image that my ignorant subconscious created before, from all the outdated glimpses into the lives of adults with the condition when I was a child.

Moreover, having analysed the root of my early feelings I see with absolute clarity the disability lie that we are all spoon fed and fear a somewhat sinister and subtle guiding of women by medical professionals to terminate. How could I have made a decision back then, based on what I thought I knew, but was utterly ignorant of?

I was then and still am pro-choice, but today, knowing what I now know, would I terminate a much wanted baby because they had an extra chromosome? Absolutely not.

We shudder as a civilised society at the thought of past atrocities in eugenics and ethnic cleansing. But of course the Nazis began with those with disabilities. Those acts were evil genocide, yet terminating disabled foetuses happens every day, slowly eradicating one particular group of people from society in a way that we barely notice. We are making decisions about which lives are and aren’t worth living based on what we think it might be like to have or live with a particular disability.

We pride ourselves on our equality laws, those that give each individual the same rights, whatever their gender, ethnicity, sexuality or disability. Yet we are shouting loud and clear to adults with disabilities that they are worth a little bit less with our abortion laws.

The cut off point for an abortion is 24 weeks, unless the baby has a ‘severe handicap’. (Awful, outdated language I know, but then it is an outdated law.) Then it is legal to terminate that pregnancy up to and including during birth at 40 weeks. There is no definition of ‘severe handicap’ at all and it is very much down to each doctor’s discretion.

Babies with Down’s syndrome, talipes and cleft lip and palate do end up in the stastics that make up these late abortions, ie those with a mild to moderate developmental delay or superficial physical problems. Hardly attributes that render them ‘not compatible with life’. Now that is an uncomfortable truth if ever I stumbled across one.

Partly I can only assume this comes down to the perceived cost of an individual, how many "Quality Life Years" they can be expected to have (that is an actual measurement used) and our collective internalised fear of disability and the view that it is a burden to us all. But the reality is that disability is a normal part of life, furthermore, one that we are all one accident or illness away from.

Let’s examine the example of Down's syndrome. 92% of all women who receive an antenatal diagnosis of DS opt for an abortion, (not all women agree to the standard tests however), a further 2% of babies will be miscarried, leaving an approximate live birth figure of 6%.

We all know what happens in societies where womens’ rights to end an unwanted pregnancy are removed. But being pro-choice does not always mean choosing an abortion. The whole point of choice is deciding to take one of at least two paths.

The right to truly choose is being able to make an informed decision based on unbiased facts, within a support network. If that was the case, I hazard a rough guestimate that around 50% of women might choose to abort a baby they might feel unable to cope with. But when we trust our doctors implicitly, and those doctors are ‘sorry’, telling us the ‘bad news’ of ‘chromosomal anomalies/abnormalities’, that our baby has ‘tested positive’ for this or that, and when an abortion is the advised and assumed only option, then the choices we feel are our own are perhaps the result of a subliminal message.

Time and again women are being left unsupported at every step of the process. Before and during testing and screening, while waiting for results is a particularly stressful time, not to mention after the results arrive and whether they choose to terminate or keep their baby with a disability.

Of the years I have been writing DownsSideUp I have spoken to only a couple of women whose experiences were positive, where they felt supported, because they had an understanding midwife and consultant. The vast majority report quite the reverse.

Those who choose to continue a pregnancy of a baby with Trisomy 21 are often treated with less respect than those who opt for a termination. Their maternity care changes, for example:

“I was repeatedly told that a termination could still be arranged at every scan. Eventually I asked them to write on my notes not to ask again.”

“We were treated like naughty school children when we made the decision to continue the pregnancy.”

“My consultant said he could no longer care for me if I continued with the pregnancy.”

“We were given 2 leaflets, one on amnio, the other on termination.”

“My midwife said there was a slot for a termination the next morning.”

“I had a termination as the baby had Down’s syndrome. I will refuse testing next time.”

“The (male) consultant told me my marriage would be over if I continued with the pregnancy.”

Is the choice that women have fought for actually being removed from under their noses, without them realising? Is the choice to continue a pregnancy with a baby that doesn’t fit the ‘Gold Standards’ of the ‘Decision Planning Strategy for Screening’ being taken from us? Have we got our eyes on the wrong ball?

Every woman in the land should be jumping up and down whatever their beliefs or whether they consider themselves a 'feminist' or not. For me, feminism is not assuming that abortion is the only, right way for every individual. Feminism is supporting all women, with advice, information, counselling and really championing their choices. It is understanding each other’s lifestyles, views, beliefs, differences and helping each other in this bloody tough world, not adding to each other’s strife.

Natty baby

The wider moral issue for me is this: How do I explain to my daughter, when she is a grown woman herself, why there are so few adults around her with DS? How do I explain the excited newspaper headlines that hail the new sensitive tests as enabling their eradication. How do I make her believe that her voice counts the same as any other woman’s, that her life is worth every bit the same as the next? How do I make society see that she has the same rights to work, a relationship, hobbies. loves and vices as the rest of us? That she is not cute, not simply a 2 dimensional musical and loving caricature, that she is never a burden, that she gives back more than she takes, that she is a fully rounded woman.

How will I do all of that when the words and actions of so many unthinkingly assume that she is not?

Hayley Goleniowska
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Rosalind Grainger

Great column on an issue that is rarely highlighted. In 2006 was offered termination at 32 weeks because there was evidence that daughter’s brain not developing as it should be, probably due to unidentified genetic issue. Termination offered despite no info being available on severity of developmental delay that would result. Zero support available. Not one piece of positive info available about reality of parenting child with learning disability. I doubt that has changed. Trauma of dealing with the fetal medicine experience 1000 x worse than reality of living with delightful child with global delay.

Mumtomany

Excellent article. I was offered a termination because there was ‘no hope of a good life’ for my child. When continuing throughout the pregnancy, I was offered a termination frequently. That baby is now a strapping 12 year old and I love him to bits.

TheBoyandMe

Well done on writing about such a wrongly controversial subject. You know my stance that there really shouldn’t be a problem or stigma attached. Excellent points made.

Rosalind Grainger

I should add that although the hospitals concerned didn’t feel the need to supply any positive views of children with neurodisability, mothers on mumsnet’s special needs board were fantastic and gave me great advice.

Stephanie Nimmo

I wrote about this on my blog a couple of years ago as we were given a 1:4 risk of Down with our anomaly scan with Daisy and it was assumed we would terminate, while a CVS was clear what we were not told that all that this did was exclude the known syndromes. Post natally our daughter was found to have a rare syndrome she shares with only 250 in the world, had we known this would we have terminated? I’d like to say no but knowing how scared and unsupported we were of the downs possibility at the… Read more »

Stephs Two Girls

and following on from your thoughts, should we really be allowed to test for anything – i.e. why not stop the testing, rather than aim for everything? I suppose the trouble is, where do you draw the line… I’m totally with you on the pro-choice front, and on everything else you manage to say so eloquently also. You are amazing, and so your daughters will grow up to be amazing too, because they are learning from the best role model xxx

Donna

Such a great article on such a “taboo” subject. We declined all screening and it was amazing how many “really?” responses we received.

sandyfaithking

We have sleep-walked into eugenics and I think it is enormously sad. Well done for a sensitive, thoughtful post.

kedlestonderby

As one of the 4% I do think our excellent service at the hospital really helped. We were treated by the fetal medical professionals as people – and given support, help and literature. We knew at 13 weeks about Kara and I am not going to lie about thinking about the options but because we had proper support, scans and meetings we knew exactly what we were doing. I cannot thank those people enough because we are so happy with Kara

Mrboosmum

Such a well-balanced and important post, Hayley. I too am pro-choice but was horrified just last week when someone asked me if I would have aborted Boo if I’d known he would have been born prematurely and developed CP. The experiences of the parents you describe are just horrific.

Wendy Marfleet

Hayley – I hope Naty lives in a community like my daughter who is now 25. A lot comes from those who lead social care. Locally it is seen as her right to choose how to lead her life. She is asked her ideas AND listened to. Apparently this approach costs less than the “we all play bingo then have squash and biscuits” approach. Presumably because people choosing are automatically more Independant than those having to conform to what is imposed on them.

Wendy Marfleet

The more our fab adults are just living their lives in their community the more they will dispel the “fear” of Down’s syndrome. Katherine loves her job at the hairdressers. She chats with the staff her age about her interests – boyfriend, music, tv, going out, Facebook- the same interests as theirs. I can’t begin to think what confusion they will feel when in the future they are offered prenatal testing. And what about Katherine’s sister and brother? Katherine is our oldest (25) and when I was expecting my younger 2 yes I did have amniocentesis though I am very… Read more »

Graham lamont

A great column by Hayley and one which is typical of most parents of children born with DS, simply because they can’t imagine their life without this wonderful & unique sentient being running around at their feet & I’m exactly the same. I have a daughter aged 3 born with DS and we only found out after she was born. Hand on heart, it would not have made the slightest difference to us, had we known during the pregnancy. We were having the baby regardless, but I remain pro choice, just as Hayley is. But, I too have concerns at… Read more »

Allice

Thanks for your well-balanced and non-judgmental article. I terminated a child due to down’s syndrome. I don’t regret my own decision at all, but reading your article made me happy for you and your lovely daughter too. Keep writing!

Lucy r

What a fantastic article, thank you, this expresses exactly how I feel

Catherine Gilmour

Great post. Im currently expecting a daughter with Downs. At a cardiac appointment my partner was told that 95% or so were terminated. He had asked the question and the answer was aimed at being conciliatory and supportive of us making THAT decision. (not) It made very uncomfortable listening though. Personally Id already made MY decision. I have felt really supported in general. One or two medics asked “and are you continuing” when they found out, but other than that its been support all round. I hate the fact that Downs is lumped in with ‘incompatible with life’ diagnoses. I… Read more »

kedlestonderby

We found out antenatally too and have a beautiful healthy two month old daughter. Good luck with everything 🙂

Stephs Two Girls

I think it comes back to education. I hope I can have this conversation with my girls before they get to that point, but the question is, will they listen? Before you have any children of your own, it is so difficult to put yourself in that place and imagine it. At the not-so-tender age of 33, when I had my first child, I’m not actually sure I would have listened to my wise mum even if she had tried to explain why I might not want testing after all; I just wasn’t aware of why I was doing what… Read more »

Lex

What a great and thought provoking article, I too had tests for this that and the other, I don’t recall much choice in the matter and remember holding my breath when they announced results and stats and said it all looked good. I did wonder what I’d do if it didn’t, mine was a twin pregnancy, I respect others’ choices but knew in my secret part of my head I would not be able to abort any child with DS, what would I do with 2? I wasn’t sure if there were other abnormalities they listed that would make me… Read more »

Renata

Hayley this is a brilliant piece, and you already know I agree with your stance. I think it is an uncomfortable truth to be faced with, but one that it’s time we did. I have high hopes that Natty will follow in your footsteps and go and give talks to prenatal testing facilities and obstetricians when she’s older. Disabled children are rarely true representations of what the medical professions document, they are far too vibrant, interesting, challenging and alive to be valued by weighing the worth on their ability to financially contribute to society… because at the end of the… Read more »

Tania Tirraoro

Hi Renata, just before Hayley replies, I want to say I completely agree with you, both the sentiment and the fact that this is an incredible post and I am honoured that Hayley chose to use her column to express her views.
Tania

Tattooed_Mummy (@tattooed_mummy)

14 years ago when I became pregnant with DD I was almost an ‘older mum’ and my husband, her father, was very definitely an ‘older dad’ I opted for no testing, certain that whatever happened my baby would be my baby. I was initially terrified of Downs Syndrome but a chance encounter with an adorable little girl while I was pregnant made me see that Downs Syndrome wasn’t a person, it was just one thing about that person, and I stopped worrying. But that isn’t why I stopped to comment! My comment is that when I told my (male) Doctor… Read more »

Stella

Excellent post Hayley and one which we need to continue to shout about until laws and hopefully attitudes are changed, particularly some of those in the medical profession/ positions of power. Just because we can test, doesn’t mean we morally or ethically should…..and the fact that we can only test for certain ‘anomalies’ means these groups can’t avoid being discriminated against. And if testing is here to stay, then surely mums-to-be need clear, factual and unbiased information in order to literally make a life/death decision!!

I have written about my own experiences of an ‘abnormal nuchal fold reading’ at:

http://www.3star21.co.uk/2013/10/terrible-statistics

Lara ( Trails Of The Unexpected)

Thank you for this wonderful, heartfelt post. It comes in the week where I am looking through my book that I have for my daughter Emily, who 11 years ago, almost to the day, was diagnosed with severe spina bifida and hydrocephalus. Our decision to terminate the pregnancy at 21 weeks gestation was made after a plethora of information and emotions were laid bare. I do feel that the information given to us at the 20 week scan was heavily weighted towards termination, quite possibly due to the severe abnormalities that Emily was faced with. We have not regretted our… Read more »

Judith

I came across this blog by chance and have been moved by what I read. I am truly shocked to hear that 95% of DS babies are aborted. I had to go down the ivf route as a very much older mother to be. I cannot imagine then that I would have aborted my baby had any test been positive. I didn’t think that much about the test (I was so tired and had such a fuzzy head), only that I would have some time to read up on any ‘condition’ that might come to light and make sure my… Read more »

Helen

Like others have already mentioned, I am aghast at the statistics you’ve quoted. I am pro-choice, but do not think I could forgive myself for having a termination. I understood that late stage terminations were only where the mother’s life was threatened. I had a close friend who had an abnormal nucal fold result after trying to get pregnant for a while. We had quite a discussion about the implications of further testing. As far as I know, she decided not to risk the life of her baby and he’s now her pride and joy. So when I was offered… Read more »

Amamama

Helen, you are not alone in your – regrettably erroneous – assumptions that people will respect our decisions around testing. We opted for non-invasive tests only, on the basis that we would want a heads-up of any conditions that the baby might have, but not to terminate if a condition was found. Boy, were we ever naive. The nuchal fold scan showed transparency, and when we refused CVS/ammnio, we were treated to a rant about how it was an abuse of the facility to arrange the scan (and incur costs?) but not be prepared to ‘follow through’. Don’t want even… Read more »