In the past months we’ve seen racism creep into the mainstream. People verbally and physically abused for simply not being British – or indeed not looking British enough. Many of us tut and shake our heads at the intolerance, and shout that we’d welcome a more diverse nation. But what you might not know is there’s an intolerance closer to home, hidden in the silence and pain of baby loss, an intolerance that could mean a whole section of our society is literally wiped out.
Sally Phillips, AKA Shazza from Bridget Jones or Tilly from Miranda, is presented a programme last night called A World Without Down’s Syndrome? about the potential consequences of introducing the NIPT to mainstream screening during pregnancy for Down’s, Edward’s, Patau’s and Turner Syndrome. It’s more accurate than current screening and safer as it involves a simple blood test from the mother. It’s currently only available in private clinics for general screening, but also available on the NHS for diagnosing specific conditions. I know this because it was used to confirm our little girl, Aurelia, had a fatal skeletal dysplasia, or a fatal form of dwarfism, called Thanatophoric Dysplasia, earlier this year after her 20 week scan showed she wasn’t growing as she should.
I’m not against the NIPT per se, indeed I can’t express how much it helped us. It provided reassurance this shouldn’t happen to us again as it was a random, as opposed to an inherited, genetic condition. Furthermore it confirmed she had a condition she wouldn’t suffer with. This felt like it gave us the choice to carry on the pregnancy and make the most of whatever time we had with her. Indeed, strangely those next 16 weeks, including the day she was born and passed away, were some of the most peaceful and happy ones of my life.
The testing could be used for great benefit in identifying conditions like Down’s in order to anticipate the care needed shortly after birth. But it’s not the testing itself that is the issue. It’s the counselling many parents receive before and after screening.
When we had our initial diagnosis with Aurelia that her condition was fatal we were given three options: termination, a blood test and a second ultra-sound. NEVER was the option even mentioned we might carry her. Now we were lucky that we had time to research her condition and that once we showed we’d made an informed and reasonable decision, we received amazing support in continuing the pregnancy. But still the assumption had been we’d terminate. You might think this was fair enough given her condition was fatal, but many parents whose babies have disabilities that are not fatal receive the same assumption.
The counselling around Down’s Syndrome is a classic example of this, with parent’s being presented with frightening statistics of life expectancy, heart problems, high rates of leukaemia and the ‘life sentence’ of looking after a child with a learning disability. It’s a one-sided presentation with little or no balance, and indeed if parents get past the miserable outlook in one piece, many then face active emotional pressure to have a termination, or are rushed into a one without giving parents a reasonable time to think it through.
A lot of people have tried to simplify this debate into a pro-life/pro-choice debate. I don’t think it is about that. This is more about us deciding what kind of society we want ours to be.
I don’t think Jesus could be much clearer about the society he wanted to see; one where the vulnerable members of society are to be loved and cared for, for us to be compassionate and ease other’s suffering.
Yet so much of the suffering from a disability comes from the lack of support from society and the prejudices society holds. Next time you travel on the tube, take note of how many stations don’t have a lift or you need to step across a large gap into the carriage. Or look around your church, is there a BSL interpreter for people with a hearing impairment? Is the Bible they are using accessible?*
It’s no wonder so many parents feel they have little option but to terminate when those with disabilities are often so excluded from society and we see their disability as a burden to them and us.
And while we’ve come a long way from the institutions of the past where people with disabilities were sent away to be hidden from public view, what does the pressure to terminate communicate to those already living with disabilities. That they should never have been born?
We are a modern society who can offer so much support to people with disabilities and indeed allow them to flourish and in turn contribute to society themselves. Even Aurelia in her own way made a difference. Just her presence, her story, the way she defied odds by fighting on, the happiness she gave us in her short life has changed us, has begun the process of healing some relationships, has helped other people through trauma and her name lives on with a project being run by Saying Goodbye called Aurelia’s hearts. She did that with a few minutes of life in the outside world, imagine what we could miss out from other babies with disabilities?
If NIPT is brought in without changing the way parents are counselled that’s exactly what we’ll lose. In Iceland since NIPT has been brought in the rate of termination of those with Down’s has gone from 90 per cent to 100 per cent. Similar has happened elsewhere and will no doubt have consequences here.
Think how that could change if we upheld those with disabilities, that we recognised too that they have been “fearfully and wonderfully made” (Psalm 139:14) and celebrated and supported their difference. It might mean many more parents felt they had a choice to bring their so very often wanted baby into the world.
In the lead up to Aurelia’s birth I sometimes had moments of fear that I’d be frightened when I saw her. But as she was put on my chest and I looked down at her, all I could see was the most beautiful thing I had ever seen, a tiny person who had changed me and taught me so much about love and God just by carrying her and giving birth to her. Whether you’re pro-life or pro-choice, let’s at least give people the proper chance to choose.
*If not, I’m currently managing Biblica’s Accessible Bible project – take a look here to find out more.