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.
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.
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?
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
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.
I would like to think that we have moved forward with support for women at point of screening, but sadly I think with ever sensitive testing and an incresing drive for ‘perfection’ this will never be the case. Love to you and your wonderful daughter. Hayley
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.
it seems that somewhere along the line we have made a decision as a society about what makes a life worth living. Termination seems to be offered as an early kind of euthenasia I guess. I’m so sorry you experienced that pressure to terminate. It must take great certainty of mind to carry on a path you are being advised against. Hayley
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.
Thank you for your support. I was genuinely nervous about speaking out, but I see what’s happeneing all around me. We need to support women whatever choice they make.
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.
That is where sites such as this are invaluable isn’t it. One has to know where do dig about for the right support though…
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 time, the thought of a rarer, life limiting, severely disabling syndrome would have been terrifying.Here’s the post I wrote about how we almost have too much information antenatally http://www.wasthisintheplan.com/2012/06/too-much-information.html
I recall your powerful post Steph. It is a very important point you make, that we only test for the known, most common syndromes, many others are undetectable or caused during the birth process. We cannot test for everything,yet.
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
Such a great article on such a “taboo” subject. We declined all screening and it was amazing how many “really?” responses we received.
And there, just in that word ‘really?’ is encapsulated all the assumptions and beleifs of the powers that be. I actually had a midwife who told me not to bother having a blood test as it might be confusing and conflict with the nuchal fold results. She was a wise woman.
We have sleep-walked into eugenics and I think it is enormously sad. Well done for a sensitive, thoughtful post.
Yes, perfectly put. I think we have and it has been done so subtly that we don’t realise that’s what it is.
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
I have watched your family’s journey with admiration and it has been clear to the world the difference that ‘Getting it Right, Right from the Start’ can make. You were supported, listened to and your experience should be help up as a beacon of good practice. Thank you for sharing with others.
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.
Gosh, how people can ask such questions when your gorgeous son is here and part of your life is beyond me. I don’t think anyone has actually ever asked me the same about Natty, but I have had the ‘you could give her up for adoption’ and ‘ oh, didn’t you have testing then?’ a few times.
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.
Very interesting comment Wendy. I thank you so much for your experience and invaluable input. Natty is a little young for us to know about adult opportunities locally yet, but I know exactly what you mean about bingo, bowling and squash! We constantly encourage her to make her own choices, in fact she takes that to extremes sometime!
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 sure I couldn’t have ended the pregnancies. So why did I have the test?
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 the amount of babies with DS being terminated, when clearly there is no need……and we are living proof of this having a healthy wee girl, who walks, talks, is toliet trained and attends mainstream nursery.
So, what’s the solution. Obviously much more education for potential parents needs to take place. We need to arm parents with the knowledge and understanding that a baby born with DS or another learning difficulty or syndrome is not the end of the world, even if it feels like it initially. We need as a society to look at and reflect on what is regarded as normal and how we create a world, which offers everyone the opportunity to realise their full potential, where no one gets left behind.
We need role models and trail brazers from the community to change the perception of disability, to show what can be achieved and to focus on skills and strengths. We need employers to connect with the community and offer the same opportunities that the rest of society gets. We should strive to ensure that all our children have the right to live independently and to have fulfilled and exciting lives.
Nothing like a wee challenge to get us going-;)?
Thank you for your wonderful comment Graham, you hit the nail on the head. Let’s get trailblazing…!
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!
Allice, the fact that you have commented means more to me than you can know, it means the article came across as I meant it to. What is needed is support for all women whatever their choice, I’m glad you got that support.
What a fantastic article, thank you, this expresses exactly how I feel
Thank you Lucy. It’s a lesser known areas of the debate but one I think needs to be exposed.
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 am anticipating a long and happy future with our daughter.
Congratulations to you all!
But yes, the figures are uncomfortable reading. I’m so glad you have felt generally supported and not under pressure. Wishing your daughter a safe arrival 🙂
We found out antenatally too and have a beautiful healthy two month old daughter. Good luck with everything 🙂
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 I was doing or what choice I might be giving myself if I had found the tests to show something I thought I didn’t want.
Sorry, I don’t think I’ve expressed that very well at all! I just think, coming back to education, that all of these issues should be talked about and understood at a much younger age – why not start at secondary school along with the sex ed (but please don’t anyone jump down my throat about that…!)?!
You’ve expressed it perfectly Steph. None of us think it will happen to us, that’s the arrogantly ignorant phase of my life as I refer to it. All we can do is educate, include and make disability a ‘normal’ part of life so that it becomes less feared.
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 change my mind, I wasn’t sure how WE could choose life or not. My children were born healthy, scroll forward 13 years, their strange latent genetic syndrome only emerging In mid childhood years, slowly stealing away previously typical development, our lives a never ending stream of paperwork and services, the ability to care dissipating as the children no longer seem cute and enter their less attractive physical years. New attitudes evolve, often based upon whether procedures and treatments are worth it or not, whether the child feels pain or not, whether they are going to live a fulfilled life or not? Worse of all alongside this a new slightly sinister note despoils my ragged determination and love, a hint of services deciding what amounts to the development of independence, their call not mine, in their bubble world, not in the real world. They make up concerns, they raise issues around stress and report me for exhaustion, can you believe that. I meanwhile thank god I have my beautiful children close to me, I am glad I did not have a crystal ball, sorry their lives have been so hard but it remains true I cannot love them more, my beautiful broken children, you gave me the value of life. We have to fight the discrimination, the pathologising, the sidelining, the patronising, the ownership or acquisition of OUR children by services in the name of personalisation, or even inclusion … some of us become their voice, we need to use this wisely. Yes, eugenics is the right term, if not overtly then a form of social eugenics. Disability rights are so often really disability wrongs.
Thank you for your response. I read and nodded and smiled. Yes, we wouldn’t change our children for the world, no, not everything can be tested for and no, we are far from the support and understanding we need to banish those disability wrongs. H
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 day that’s what it comes down to and has done since the industrial revolution. Best post you’ve ever written x
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
Thank you Tania, for the soapbox and microphone, and for trusting me that this post would stike a chord with many. H x
Thank you and yes, our children are not the sum total of their symptoms and neither can we measure the value of life in pound coins. Much love to you all, H x
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 that I didn’t want tests he pushed and pushed me to have them, telling me of the ‘risk’ of Downs Syndrome etc etc. I said that I wouldn’t terminate so it was irrelevant, to which he replied “are you sure? I would terminate a baby with Downs Syndrome if it was me” at the time I just though ‘well you are not me’ but looking back it seems horrifying a doctor would force his views so strongly onto a pregnant woman.
All life is precious. And while tough decisions need to bemade sometimes they should certainly be made with all the facts.
Sorry I wrote a book! 🙂 Great post
I am shocked, yet not surprised at your doctor’s comments, and how might we all have reacted if a little more trusting, or nervous, or less certain…?
Yes, it’s a complex moral issue, and yes, tough decisions for many women, but facts and support are all we can ask for.
Thank you for sharing your experience.
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
Absolutely. What are we testing for indeed? But testing coupled with assumption and coercion is a dangerous combination.
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 decision as we feel we were able to research all possible outcomes with both the medical professionals we dealt with as well as talking to family and friends throughout the period of time we had between the scan and the birth of Emily.
Thank you again for highlighting this subject. Lara x
Lara, thank you for having the bravery to comment. I’m glad you had the support you needed at the time, it must have been so very difficult for you.
Yes, it is a tricky subject but one which often gets missed in the noise of the disagreements between the extreme opposing views.
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 baby and myself were well supported. I had twins who are keeping me very busy (nearly 4.) I am open mouthed at the way people have been treated apparently by many in the medical profession and feel just a little sick at the thought that our communities have been so robbed, distorted and missed out on so much through losing the contribution that these ghost children/adults would have shared. I don’t mean to judge or offend. I have noticed that my boys make no judgement or don’t take a second look at people who have DS. Their child minder has just taken on a 6 month old baby with hydrocephalus and other health issues. All I knew, until my child minder (also a scbu nurse) mentioned it, was that my boys talked with excitement of the new baby and mentioned once that it had a tube in its nose. I just commented that they did when they were born, for feeding. They made no comment about the baby being ‘different’. I’m so glad they see the person and nothing else. It hadn’t occurred to me the other side to all this when children with DS become older and notice the debates about testing. Quite sobering.
Thank you for the post. And thank you to everyone for enlightening me. I can feel the love. Congratulations on your wonderful children, and babies on their way. Judith xxx
We have much to learn from children don’t we. Natty’s classmates too only see her for the little girl she is, nothing more or less. Thank you for reading.
Our goals may be similar yet you are much like the Wind in Aesop’s fable, and I am more akin to the Sun:
‘The North Wind and the Sun were disputing which was the stronger, when a traveler came along wrapped in a warm cloak.
They agreed that the one who first succeeded in making the traveler take his cloak off should be considered stronger than the other.
Then the North Wind blew as hard as he could, but the more he blew the more closely did the traveler fold his cloak around him;
and at last the North Wind gave up the attempt. Then the Sun shined out warmly, and immediately the traveler took off his cloak.
And so the North Wind was obliged to confess that the Sun was the stronger of the two.’
(I have not allowed your other comment, which I felt to be an attack on a vulnerable woman who had bravely shared her difficult and emotional story in order to support and help others. Rather than judging and honing in on weakened individuals, this needs to be a broader discussion.)
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 the tests, I wasn’t too fussed as I assumed that a negative result would just give me time to educate myself – I was learning so much as a first time mum anyway. Reading about the experiences of some of the people on hear, I won’t be having the tests next time as I wouldn’t want to have to spend the rest of my pregnancy fighting to keep my baby if I did get a negative result.
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 to think about what would have happened if we had had the amnio (which would have confirmed the diagnosis – at further cost) but then turned down a termination.
The labs refused for weeks to release blood test results because we hadn’t had a ‘full panel’ done – it took a lot of talking to convince them that we had the right to be selective about which tests we accepted, and that they did not have the right to hold the results hostage just because their ‘normal’ process was not to release any until they had ‘full results’.
We were referred to an organisation called Antenatal Results and Choices. They offered allegedly non-directive support with evaluating test results and choosing where to go next. They also offered what seemed to be pretty much open-ended ongoing counselling/psychological support for people whose baby had a diagnosed condition – but, it transpired, only if the pregnancy was terminated. When I explained that I would appreciate access to continuing support as we would be continuing with the pregnancy, but I didn’t expect having a child with a disability to be an easy ride, the response was a kind of horrified disbelief. Eventually, they admitted, rather defensively, that ARC didn’t provide ongoing support for people unless they chose termination and gave me the details for Contact a Family. After that, they wouldn’t talk to me any more. Some non-directive, huh?
I found out later that ARC used to be called SAFTA – Support Around Foetal Termination for Abnormality. Fair enough, I’m glad that a safe place and support are there, for those that choose this route and perhaps find themselves struggling later. But It is quite wrong, I think, for parents who have chosen a different route to be herded into this same pen.
And I did feel very much as though it was considered unreasonable for me to have been seeking support, as though it was perfectly reasonable for the attitude coming back at me to be, ‘You have made your bed, now you lie on it and don’t expect ANYTHING from anybody, EVER, from here on out, for you or for your child, you selfish, community-parasitising, nutjob’.
Definitely eugenics and pre-natal euthanasia.
Oh, and be warned, testing affects your birth experience. I was low-risk, booked for a home-birth, suddenly I was being told I ‘had to deliver’ in hospital so that the baby could go straight to SCBU. It was hard to see how this squared with the ‘get rid of your defective foetus’ mentality, but there it was. We knew, from ultrasounds, that the baby did not have any major-organ anomalies. So that was more polite refusals to comply (if they were half as sick of me as I was of them by this point, they must have been feeling fairly nauseous). I was told that the obstetrician would take me off his list, and had to point out that it wasn’t in the Health Service’s power to refuse me maternity services just because I disagreed with it over where I would give birth. I eventually went to see the Head of Midwifery, but only after making it clear in advance that while I was happy to discuss with her the practicalities of giving birth at home, my decision to do so was NOT up for discussion and that if that decision was questioned at any point, it would be the end of the meeting.
Baby was born at home and went straight to the breast, not SCBU.
I guess all these experiences stood us in good stead when it came to dealing with DLA, getting Portage, a Statement, therapies-specified-as-education etc etc but it was pretty miserable coping with the stress when pregnant. In some ways I wish we had refused all tests, so that we would only have had to tell them to fuck off once, not every week for months; but at the same time I am glad that I knew for certain, owing to all the minutely detailed ultrasounds, that there were no holes-in-the-heart or anything. Might not be feeling so sanguine if we had refused all screening and baby had been born at home with something undiagnosed and life-threatening.
Since the birth, we have found that our ability to make best-interest decisions for our child-with-a-disability are very much constrained by the way various public bodies – and public opinion – define and restrict the available choice-space. We just didn’t realise, before the baby was born, that these same processes are already operating to define and restrict the possibility of a baby coming to birth at all.