The hardest choice of all..

Over the summer I was approached to participate in Abortion on Trial, a programme the BBC wanted to make as the law is 50 years old. I agreed straight away which may have seemed like an odd decision at first.  But I saw it as an opportunity on mainstream TV to speak up about the startlingly normal and blissful life I have with Theo who may not, if I had had the option, be here at all.

I have always been honest about how I first reacted to the news that our three week premature baby had Downs Syndrome.  Up until that point, I had willed with everything I had in me for Theo to pull through, to get well and to come home.  But I admit: I did momentarily wish I had had the option of termination as I plummeted into our new reality that day.  Mostly because I was terrified and ignorant but also because I had just assumed that all would be fine with my baby.  Nothing would be wrong or unexpected.  And now suddenly it was.  And I couldn’t handle it at all. Yet having an abortion could have denied me so very much. There isn’t a day goes by when I don’t think that and count my lucky stars that fate had already set our course in motion.

What gets me every time I think about THAT moment we were told, and all those future moments parents will be told thanks to the terrifyingly efficient and imminent NIPT testing on the NHS, is how a much-wanted and loved baby suddenly becomes something less desirable, scary and in danger of now never entering the world that, minutes before the diagnosis, they were happily anticipated to do so.

That’s the same heartbeat, the same little hands, the same mini limbs that have been contentedly and safely cocooned in their mother’s wombs.  So loved and treasured and now considered to perhaps not be worthy of life, and simply not on the desired agenda after a diagnosis. It is at this awful juncture and dichotomy of emotions, that most expectant parents make a decision to terminate.  Doesn’t that seem risky?  Predetermining, suddenly, the value of a life, the capability of being able to cope with the unknown – which is precisely what it is, so how can this really be evaluated rationally – and even the right to come in to the world if you are not ‘typical’.

Thankfully, I have hindsight.  What still makes me gasp is that I could have aborted Theo based on fear, not love, and a future I couldn’t predict with a little person I hadn’t met. What kind of mother would I be, or indeed a mother at all, if I had been left to my own preconceptions pre-Theo, to not give my very much alive baby growing inside of me a chance at life?

I am most definitely pro-choice but in the above scenario of a pre-natal diagnosis, soon to be the only type of diagnosis, abortion can seem like it is the only one to make.  Hardly a choice at all.

A woman should absolutely have the right to choose but that choice must be fully informed.  It is so essential the NIPT testing is accompanied by unbiased and balanced information without the negative language such as the words ‘risk’ and ‘suffer’.  Terms like this perpetuate out-dated views and reinforce old belief systems, namely that children with Downs Syndrome should not exist. Exactly why do the medical profession think that expectant parents with babies like my son should automatically be offered life-ending treatment?  I look at Theo and of course it pains me to think that I could have destroyed him: the beautiful, happy, healthy little life clapping, laughing, crawling, eating and loving in front of me.  Like I said: hindsight is such a precious thing.   Eugenics is most certainly not.

I understand that continuing with a pregnancy of a likely disabled child is as difficult a decision as most people will ever make and deciding not to seemingly, and shockingly, happens without much discussion or up to date information.  I said time and time again to camera that abortions were pushed on women almost immediately after a diagnosis, like they were a natural reaction to a diagnosis.  Many mothers are still taking the news in, yet are told that the next step should be to terminate. And when would they like to book this in?

This is what needs to change and soon.  Instead of peddling this option, an option we all know is there, real life stories from blogs, the media and social media should be gently offered and then parents can come to whatever decision they arrive at from a neutral place.  And, most upsetting and unbelievable of all, is that a baby with Downs Syndrome can be legally aborted up to full term.  Imagine the scenario –  your baby could be days away from being born yet because of one extra chromosome, it is within the law to kill it. What subliminal messages does this feed to society? Or, indeed, how does that make people living with Downs Syndrome feel?  That they were lucky to live? That they should be grateful to have made it in to this world? How utterly dreadful and depressing.

2018, only weeks away now, sees NIPT testing rolled out which will detect every baby with Down’s Syndrome, for those who agree to have the testing done. 90% of women currently chose to abort.  That is 90% of children like my son who never make it, just because of their extra chromosome. Just because they are them.  What precious people are we disposing of simply because they don’t have what we do: a typical set of chromosomes.

Even with a typical set of chromosomes there are no guarantees – a child can grow up to be an abuser, a killer, an addict, yet they are not judged and their unborn lives are not valued any less.  We will, inevitably, have far less babies born with Downs Syndrome – some will view this as a success – but I fear this future. I fear that abortions are being carried out once we have deemed the worth of an unborn child’s life, based on what we know, of think we know, about a diagnosis.  It begs the question: who are we to judge?  In a world where we rightly appauld the Paralympics and celebrate individual successes against the odds with one hand, we are almost encouraged not to continue with a pregnancy of a baby with a disability with the other. A disability that varies so much and is only a small part of who that little person will be.

So, more women should base the difficult and heartbreaking decision of abortion on better information about Down’s Syndrome and not be pressured, as some are, and almost expected to, abort. Every one of us brings something unique to the world – surely we can see the value of difference as well as of conformity? My dear, dear son feels like an endangered species and all the other, future unborn babies who will now come under the NIPT radar, are also at risk of being wiped out whilst society marches on blithely to the eugenics tune.

It is more important than ever to change attitudes, advise medical professionals to deliver the news in an unbiased way and with the help of the media, have real-life stories ready to hand to dispel out-dated myths.  There is still so much fear around the condition and it robs a parent of so much.  The Downs Syndrome community has seen a difficult year this year, we know the tests are coming but we fear that they are there to detect and destroy not detect and prepare.  We are not against the tests but we tremble to think of the repercussions. We are on the precipice of tipping over in to an unfortunate, brave new world where ethics and morals are woefully behind.  And children like ours are at risk of becoming so rare, that society could slip backwards from this fortunate, liberal place we have apparently found ourselves at.

Abortion is a choice, it’s not the only one, nor should it be presented as that.  Perhaps the next programme the BBC should make is Attitudes on Trial…

 

Abortion of Trial, presented by Anne Robinson, was shown on BBC2 in October 2017