Ultimate Choice or Infanticide: The Human Reaction

*Trigger warning: late-term abortion*

I have mused this post for weeks. Each time I sit to write to you, and 'you' are many, my head fogs with the complexities.

The laws, the campaigns, the emotions and stories - mine, yours, theirs. 

I have procrastinated because I can hear the noise of the polarised disputes before my words even reach the screen. 

Ultimate choice or infanticide? Ground E abortion law and beyond

"This is tearing our community apart. It's so complex." I wept.

National News Interviews on Testing and Down's Syndrome

Relaxing with our Girls

"Right girls, lets make some popcorn and go and sit on the sofa and cuddle up." 

It was time to watch Pets with the Xtra Factor Strictly Do the Most Talented Things Whilst Coming to Dine with Me or whatever it is that's on on a Saturday evening these days. Daddy Downs Side Up was away, and we had a girlie evening planned.

We'd been in our pyjamas for the last hour and had just taken our lovingly made meringue for the Big Lunch out of the oven ready for the next day. I was washing the last of the dishes and had poured a glass of something cold, crisp and white in readiness for full relax mode.

An ordinary Saturday turned into a media day in minutes

The phone rang. Thinking it was Daddy, Mia answered it with an excited "Hiya!" Silence while someone spoke on the other end of the line. 

Are Women Given Enough Support at Antenatal Screening Tests

Do women really have a choice whether to abort or not following an antenatal diagnosis of a disability?

Are we walking blindfold into a society where eugenics is gently-presented, sugar-coated and unthinkingly accepted? 

Are we fooling ourselves that we are exercising choice in our pregnancies, where actually choice, the choice to continue with certain pregnancies is being removed?

This week a new 'safer, earlier and 99% accurate' blood test was unveiled by Great Ormond Street Hospital. I can detect Down's syndrome along with other chromosomal conditions. I've been asked countless times by the media to quote my thoughts about the test. What concerns me most is how the test is implemented.

Are women given unbiased support to make informed choices at point of diagnosis?

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.

Dear Past Generation Mom: who wished she had aborted her son with Down's syndrome

The following was written after an article that appeared in the Daily Mail this week that came with the designed to shock-and-divide headline 'I Wish I'd Aborted the Son I've Spent 47 Years Caring For'.

Rather than lashing out at the mother speaking in the piece, I felt I needed rather to consider the times her son was born in,  her state of mind, and instead question the journalism at work which contained no regard for the voice of the man at the centre of the article which was clearly advising abortion.

Families in the 60s had a much tougher battle than we do today, and many many mums and dads and siblings were, and still are, incredible pioneers. I think this woman's opinions, which were later aired on Loose Women, are thankfully rare.

The following is written to a woman like the one the article portrayed, one who became bitter through lack of support. 

She is in no way like any of the parents of that generation that I am blessed to have met and follow in the footsteps of. Parents, and siblings I count as guides and support, such as Mardra Sikora, Sue Bessell and Elizabeth Corcoran.

Kristian Naylor writes about his Uncle Martin

Dear past generation Mum, 
(who wished she had aborted her son with Down's syndrome),

I note with respect the hurdles you have faced. 

A Word to Midwives on Antenatal Screening Programmes in Journal

Screen test - antenatal screening for Down's syndrome

by Hayley Goleniowska, author of Downs Side Up

This week my article for Midwives journal is published: Issue 4 :: 2014 

It needed to be cut, there was much more to say, but a word count prevailed, still an article on this topic in a medical journal for Midwives is a massive step forward. Emails from midwives have already begun to arrive. There is so much amazing practice around, but also so many sorry tales of lack of support at the time of screening.

Before Natalia was born, I unquestioningly believed, as do most prospective parents, that the recommended antenatal tests were for our peace of mind. I naively spouted that we didn’t mind what the sex of the baby was, 'as long as it was healthy'. I refused amniocentesis after an inconclusive nuchal fold scan, because of the 'risk of miscarriage to a healthy baby'.

Looking back at that previous version of myself fills me with shame because of my deep-rooted belief that a baby with a disability is somehow worth less than a healthy one. But I also see that my prejudice and fear of Down’s syndrome was a product of the way society, and some within the medical profession, view the condition.

Hundreds of Down's Abortions Misrecorded Each Year

The Sunday Times ran a vital story today: that abortions of foetuses with Down's syndrome are being hidden, and recorded as social abortions in their hundreds each year.

Those of you who follow this blog, will know that this is a a subject that I am passionate about exposing. When I gave Evidence in a Parliamentary Inquiry into the current disability abortion law in Westminster, the evidence, the anecdotes, the facts and figures, the shady discrepancies of data between organisations, the gentle push on women to terminate, the subtle language that presents that as the only option made a very profound effect on me.

I became determined, alongside many other passionate parents and support groups, that every parent should be given unbiased facts before making an informed decision about continuing their pregnancy or not. They should be fully supported whatever their decision, but all too often this is not happening.

Top tips for speaking live on BBC: toilet roll, rescue remedy and your husband's pants.

Yesterday saw my first live national BBC TV interview on an emotive subject via Skype, as I contributed to a discussion on disability abortion law and screening for Down's Syndrome on Sunday Morning Live hosted by Samira Ahmed.

Nervous doesn't come close. Honoured and proud, determined to make every word count, yet scared of who would be on the panel and the questions they might ask, yes. But more a faint shade of petrified I would say. 

And live. Did I mention it was live? Oh, and did I also mention I have a deep-rooted loathing of Skype (other similary offputting online video conferencing applications are available). I like to see the non-verbal cues going on in a room when I speak to people. Oh, and no-one looks at their perkiest no matter how much slap you apply do they?

So here are my top tips for surviving such a live online interview:

Don't run out of rescue remedy 24 hours before.

Prepare thoroughly even if it means staying awake most of 2 nights.

Don't over-prepare, it won't seem natural.

Get a good night's sleep the night before.

Apply even more blusher than your children do when giving you a make-over on a rainy Sunday afternoon.

Try to tame locks you didn't have time to straighten with some hair oil.

Don't apply too much hair oil or you may look like you need to be appearing on Aggie's Grimey Hoarders or similar.

Cellotape key notes to your laptop screen but not actually OVER the camera hole.

Get all your points in, starting with the most important first. 

Don't try to force all your points in like shoe-horning your swollen summer foot into a 

dainty court shoe one size too small.

Bring earphone cable to ears from behind your head to give a more professional air.

Check the sound levels aren't too high BEFORE inserting earphones and pushing them home.

Don't swear at the headphones while the researcher giggles at your efforts to remove the aforementioned objects and bring hearing levels back to normal by waggling fingers in your ears.
Very unprofessional regardless of how cable is hidden.

Stock up on toilet paper, for extreme nerves do have a very curiously unpleasant effect.

Realise that 2 minutes before you go live is not the time to need to visit the loo again.

Don't listen to friends who tell you to wear your husband's pants on the bottom half just to lighten the mood.

If your extremities begain to go numb and you feel faint, drink water, run round the garden and force down a rich tea finger. 

But not if it's 2 minutes before you go live.

2 minutes before you go live is also the wrong time to 

a) re-write your thoughts 

b) run for the hills 

c) remember to take the phone off the hook, 

switch mobile off, silence the dog with a chew.

When you've actually finished speaking, be aware they will have your face on screen about 8 feet high. The world will be able to see you sigh, slump in your chair and pick your nose. (No, of course I didn't!)

Remember to record the correct programme and not miss the first half off somehow.

Don't shout at your other half if he manages 

not to record the show.

Don't watch yourself back on iPlayer, you will be your harshest critic and spend another night wishing you had done it all differently.

At least I know for next time :)

You can watch the episode here for 6 more days. The abortion debate begins at around 20 minutes into the programme.

Most Important Role of My Life

Some things are so important that you barely know how to begin to describe them. 

It's almost as if saying it aloud makes it even more daunting.

I have been asked give evidence in a Parliamentary Inquiry into the current UK Disability Abortion Law to a multi-party commission.

So I will be travelling 5 hours each way for what might prove to be the most crucial 5 minutes of my life. The power to change things in a very real way is at our finger tips, 'we' being a team of 'experts' including Sue Buckley (DSA) and Dr Elizabeth Elliot (DSRF UK).

I want to speak for everyone of us and for every one of our children.

Now abortion is a very emotive subject full stop. 

My 3 nights solid of research have dug up opinions on every single point of the sliding scale between not approving of the contraception to believing that every woman has a right to decide what happens to her body right up until the point of birth regardless of her reasons, and everything in between. Personal opinion, religious belief and background all make us different and I respect that. On the other hand I have read things I really rather wish I didn't know.

This debate is not about that. Here are the facts as I understand them:

This debate is about the current UK 1967 Abortion Act (similar exists in some US States too) which limits terminations to 24 weeks. 24 weeks that is, unless 

'there is substantial risk that the child might be born seriously handicapped'. In this case abortion is permitted at any time up to and including during birth. These are known as Group E abortions.

The law does not define 'substantial risk' or 'seriously handicapped' and they can be interpretted differently by doctors or parents. Down Syndrome is included.

Further digging around revealed that annual figures for Group E abortions are fairly well hidden. There are discrepancies in the numbers recorded depending on who you ask.

Many of you have experience of being offered these late stage abortions, maybe some have felt pressured into them. With current early testing there seems no earthly reason to allow them.

What we are setting out to do is bring equality of rights to the foetus with a disability.

Stop all late stage abortions unless a mother's life is in danger.

Ensure proper unbiased support for families at point of diagnosis and ensure they are given full facts before making more informed decisions. 

Establish the intention behind the law and how it is interpreted by medical practitioners.

And of course state that Down Syndrome is not a 'serious handicap'. That goes without saying.

Wish me luck.

H x

For a more personal stance, from the archives: read Diagnosis Down's 

Also relevant: What to Say When a Baby is Born with Down's