Baby Loss Awareness Week: Not Nature’s Way

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

An early miscarriage is a lonely experience.

From the moment you conceive, hormones begin to make profound changes to your body in preparation for the birth and nurturing of a tiny human.

Even before you yourself realise that you are pregnant you may already notice a funny taste in your mouth; in place of the heavy, dragging ache that signals impending menstruation you may feel a strange tingling sensation, somewhere between excitement and cystitis, in your lower belly; your sense of smell may become weirdly acute.

Only you will be aware of this: there is no outward sign yet that announces your pregnancy to the world.

If you miscarry, there is no outward sign to show that anything has happened.

To the people around you, it is a non-event.

Early miscarriages happen away from the gaze of others: tucked away in bathrooms and bedrooms, or under clothes carefully chosen to hide thick padding, while you go about your daily obligations in the midst of personal disaster, your heart breaking quietly so as not to disturb anyone else.

If the miscarriages are recurrent, the grief is compound.

Each time you grieve not only the child you have just lost, but all the ones that you have lost before, all over again.

You grieve because your chances of motherhood diminish further with each new loss. You grieve because your sense of womanhood is bleeding to death.

And you grieve alone: even if other people knew you were pregnant. Unthinking, they utter placatory comments not to comfort you, but to comfort themselves, because they are made uncomfortable by your experience and your grief.

People don’t give you their condolences, they give you reasons why you shouldn’t be grieving.

There are no rituals associated with early miscarriage except for the ritual of denial:

‘You weren’t really pregnant – there was just a space for a baby.’ (Yes, I was. I had a positive pregnancy test. I had a scan.)

‘You’re young, there’ll be other babies.’ (But I wanted this one).

‘Chin up – at least you know you can get pregnant.’ (But that’s no use if I can’t stay pregnant long enough to give birth.

‘It wasn’t meant to be.’ (Then why did I conceive in the first place?)

The one I heard most often, though, was:

‘There must have been something wrong with it. It’s nature’s way.’

This was never a comfort, because I never believed it was true.

Each time I miscarried the ‘products of conception’ as they are so charmingly referred to medically, were sent off for histological examination, and each time they came back N.A.D – nothing abnormal detected.

My husband and I were examined also, down to an almost molecular level, and likewise, we were genetically N.A.D.

Eventually a likely cause was discovered – a peculiarity with blood clotting that the junior doctor struggled to explain to me in layman’s terms.

I was prescribed a combination of aspirin and heparin, and subsequently went on to have three children.

I did not lose my babies because there was ‘something wrong’ with them. Every day ‘normal’ or ‘healthy’ babies are lost and, every day, babies with congenital conditions and disabilities are born and survive.

Miscarriage is not nature’s way of weeding out individuals who ‘are not fit to live’. Nature does not have ‘a way’ or ‘a plan’ for dealing with disability. Nature does not make moral judgements on who deserves a shot at life and who doesn’t. Mankind does that.

When ‘Mother Nature’ fails to live up to mankind’s expectations of what she should do, he takes it upon himself to rectify her deficits: he invents ways to detect congenital conditions in the womb so that he can make sure affected pregnancies are ended by artificial means, in case nature fails to do the job he thinks she should.

The flagship condition for this kind of antenatal screening is Down’s Syndrome – it’s the one that most people have heard of.

It is one of the most feared and demonised congenital conditions. It may surprise you to learn that Down’s Syndrome, of itself, is not a fatal condition and it most commonly causes only mild to moderate learning disability.

It does carry a greater likelihood of certain additional or ‘co-morbid’ medical conditions; but most of these are treatable or manageable and can also occur in people without Down’s Syndrome.

People with Down’s can and do live happy and fulfilling lives, and so do their families. I know this because the youngest of my three children has it.

He was diagnosed antenatally. By then I knew the pain of pregnancy loss well enough to know that I could never bear to put myself through it voluntarily.

Too many times I had been carried into hospital bleeding heavily to be told by the doctor that miscarriage was now inevitable and there was nothing anyone could do.

This time, as the doctor explained to me, in not so many words, that I really must ‘lose’ this baby for the good everyone, I knew that the loss was not inevitable, there was something that could be done.

This time I had the power to say no to loss and the awful, lonely grief that comes after.

Every year in October I see posts on social media expressing sympathy for all those who have lost babies due to Termination for Medical Abnormality: often the women themselves will euphemistically express it as having ‘lost [the baby] to Down’s Syndrome’ (or other condition).

But they haven’t really. They lost their baby to society’s ignorance and prejudice.

Many of them will have been led to believe that their loss is inevitable by the medical professionals involved in their care.

They are given the worst-case scenario of Down’s Syndrome: told that the baby will probably not survive the pregnancy, or will inevitably have many serious complications, that their marriage and their other children will be adversely affected.

The ‘what-if-everything-that-can-go-wrong-does-go-wrong’ picture is presented to them as though it were a snapshot of everyday reality.

This reinforces the view that people with Down’s Syndrome lead lives of suffering, and that their families suffer too.

It reinforces the view that Disabled people are better off dead; that it is a kindness, a mercy, an act of love, to spare such babies from having to live.

The prevention of suffering is one of the most commonly expressed rationales behind the test-and-terminate mentality of the antenatal screening process. But just who exactly are they trying to spare? Studies have shown that the majority of people with Down’s Syndrome are happy with their lives, and so are their families.

The truth is that more individual suffering may be caused than alleviated.

The negatively-biased information often given to expectant mothers, either contained in literature, or by word of mouth from the professionals themselves, is inaccurate and misleading.

It paints a picture of Down’s syndrome that would not be recognised by anyone with lived experience of the condition.

When we give women only negatively-biased information about Down’s Syndrome at any point in the testing or diagnostic process we subtly (and not so subtly) steer their choices in a particular direction – towards termination as the first and best option.

This is enforced choice. This is no choice at all.

Enforced choice pushes women into choosing unnecessary and avoidable baby loss. It pushes women into unnecessary and avoidable grief, which can have a very detrimental effect on their overall mental health; especially if that decision was made because they were being pushed to decide quickly, and abortion was repeatedly presented to them as the first, best, and kindest option.

But there is another way. What if we gave women unbiased accurate information provided not just by medical professionals but by people with lived experience of Down’s Syndrome?

What if we supported women who express a wish or inclination to continue with their pregnancy regardless, and gave them an opportunity to prepare properly, and in hope, for their special new arrival, instead of undermining their judgement by repeatedly asking them to consider termination instead?

What if we just accepted their choice and didn’t make them fight for it as I had to fight for mine?

Of course, I can’t tell any other woman exactly what her life would be like as the parent of a child with Down’s Syndrome.

I can’t predict exactly the what challenges they would face. I’m not going to lie to you, I’ve had some difficult and exhausting times.

But, equally, I’ve had many utterly joyful times.

Most days fall somewhere in between – simply ordinary and contented days where I navigate life much the same as anyone else.

There is never any lack of love, or pride in my son. But what I can tell you, hand on heart, is this: living with my child with Down’s Syndrome, dealing with him every day, is a heck of a lot easier and better than grieving for him would have been.

Take it from one who knows.


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