A World without Down’s Syndrome

I vividly recall the moment the midwife handed me a box of tissues and said,pregnant-scan-photo

“If you change your mind, we can deal with this right up to the moment of birth.”

“This” is now five years old. “This” is a lively, bouncy, noisy little girl, who loves horse riding, the outdoors and Mr Tumble.

“This” is Hazel. Hazel is my daughter, she is also a sister, a Granddaughter and a friend. Hazel also has an extra chromosome. Hazel has Down’s syndrome.

That was five years ago. Two doctors both said that my unborn baby was unlikely to survive the pregnancy. They offered us further tests, which we declined, mainly because we had decided to let nature take its course. There was no point, we decided, in further testing, if this baby wasn’t going to make it.

Hazel, the Miracle

hazel-in-autumnShe made it. And, although it hasn’t always been an easy ride, five years on we can honestly say that Hazel has changed our lives for the better. And, like many other parents of children with Down’s syndrome, we question why there is so much fear and negativity surrounding a diagnosis of Down’s.

This year, the NHS is set to roll out a new non invasive pre natal test (NIPT) that will detect Down’s syndrome in babies much earlier in the pregnancy. It is being hailed as a major advancement as it potentially will mean fewer miscarriages due to the current more invasive and riskier testing that takes place. This of course, is to be welcomed. Anything that means fewer babies are lost is a good thing. However, many people are concerned that this new test will see an increase in the number of pregnancies terminated following a diagnosis of Down’s syndrome. Currently, in the UK, 90% of pregnancies that have a pre natal diagnosis of Down’s syndrome are terminated. It is no wonder, then, that people are worried hazel-in-leavesthis figure will almost certainly rise with the new test.

Increased Termination Rate

You don’t have to go far to see this happening in practice. In Iceland, for example, the termination rate for babies with Down’s syndrome is now at 100%. In Denmark, a survey showed that 60% of people believed that it was good that there were fewer children with Down’s syndrome being born.

So it was with great interest this month, that I watched a new documentary “World without Down’s syndrome?” made by the actress Sally Phillips (of Miranda and Bridget Jones fame).

In it she asks the question “What kind of a society do we want to live in, and who do we think should be allowed to live in it?” as she explores some of the ethical and moral questions that surround this new test. Sally, herself a parent of a child with Down’s syndrome, Olly, talks in depth with people on both sides of the debate.

A World without Downs Syndrome?

sally-phillips-1Sally highlights the overwhelmingly negative attitudes that surround Down’s syndrome – particularly from the medical profession itself. The list of potential health problems the child may face are often presented. Words such as ‘risk’ or “I’m so sorry” are routinely used when an expectant mum is presented either with a diagnosis, or simply the chances of her carrying a child with the condition. It’s no wonder so many women choose to terminate when faced with this barrage of negativity. Much of this information is often outdated and bears little or no resemblance to what parenting a child with Down’s syndrome is actually like.

If you haven’t seen Sally’s ground breaking film, I urge you to watch it – it’s still available on BBC Iplayer.

Please pray for the Down’s syndrome community especially – it’s very hard to have to listen to others discussing whether or not your life or that of your loved one has value.

The words of John Bell (broadcaster and member of the Iona community) are poignant and I’ll leave them here…..

“The issue is: whether the community into which (a child with Down’s) is born will be welcoming? For I believe that such children are essential to the health of our whole society.

 “Perhaps those of us who deem ourselves “normal” will only be cured of the disease of arrogant perfectionism when we are touched socially and physically by those from whom we might be prone to avert our eyes.

 “It suggests to me that those who have Down’s syndrome may be the very people through whom society is healed”.

Alison Morley

Free Range Chick Trustee and Blog writer at Downright Joy.

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