My world with Down Syndrome

Over the last few weeks my Facebook feed has been full of wonderful posts discussing the recent Sally Phillips documentary on “A World Without Down Syndrome.”

If you missed it and you are in the UK, you can watch it here..

http://www.bbc.co.uk/programmes/b07ycbj5

I watched the program, with a mixture of laughter, admiration and pain.

There was shared laughter of the joy and challenges of parenting a child with Down Syndrome.

Admiration for Sally’s compassion and ability to articulate so clearly the value of people with Down Syndrome and the potential impact of the new test.

Being a medic, I was maybe less shocked by the response of some of the scientists than some of my friends. But many still caused me pain.

I vividly remember sitting in a genetics lecture and the lecturer telling us that for all the great advances in knowledge of genetics, that at that point in time (the late nineties) it’s only practical use was as a “search and destroy mission.” I remember her commenting on her own short stature and pulling back her hair and pointing out her low set ears to the packed lecture theatre. She wondered out loud if she had been conceived several decades later would she have been terminated because she had physical features consistent with an intellectual disability.
During the previous semester, in a practical class we had the opportunity to screen ourselves to see if we are carriers of the Cystic Fibrosis mutation. I remember class mates in tears, when their curiosity revealed that they were in fact carriers. Genetics suddenly became very personal to them.

Now genetics is very personal to me.

Because the “search and destroy mission” that my genetic lecturer alluded too, is now a reality and it is aimed at people like my daughter.

Why have companies invested so much money in detecting Down syndrome in the unborn child?

Why have countries like Denmark said they aim to be Down Syndrome free by 2020?

What are they so afraid of?

However there was a part of the program I found even more painful to watch.

The part where a lady was shown a video clip of a girl with Down Syndrome completing a gymnastic routine. This lady had chosen to terminate a pregnancy of a child with Down syndrome, close to viability. She had decided that this was not a good enough life for her child.

By implication, that my daughter’s life, is not a good enough quality of life, to be worth living.
Respectfully

I disagree.

I have sat and wondered how I would respond to someone facing the same choice.

How to convey that my lovely little girl lights up our lives, how she gives the best hugs, how everyone at the school gate knows her name. How her intelligence amazes people and her joy is infectious. How I have sat at her bedside watching as she sleeps, heartbroken that people think the world would be a better place without people like Star.

However, I have concluded that for very many people I will not succeed.  I believe my daughter to be valuable because of my Christian faith. If you take God out of the equation, then I wonder who does decide which human lives have value.

I also suspect we have bought into the myth that we deserve “perfect” children.

Normal number of chromosomes.

Neurotypical.

Without visible deformity (such as cleft palate).

The list could go on.

I remember a consultant obstetrician in her broad Scottish accent, telling a couple that the Down syndrome test may predict the chance of their child having an extra chromosome but it would not predict the chance of their child being run over by a bus or becoming a juvenile delinquent. (In retrospect I am not sure how she got away with that.)

I think the point she was trying to make is that none of our children are “perfect” or will have “perfect lives.” Most will face challenges of one sort or another. Most will need some extra support, some extra guidance, some help at one point or another. Some will need care their whole lives.

Some doctors are calling for the lifetime cost of caring for a child with Down syndrome to be factored into the roll out of the new screening program. Essentially they suggest that by screening the entire population and terminating pregnancies with Down syndrome, this would save society the cost of supporting them into adulthood and that this would make offering the screen to the whole population cost-effective.

Where will this end?

Which group of human beings will the scientists seek to detect in pregnancy next?

Well if we judge human value by net economic contribution maybe we should look for the group with lowest attainment at GCSE level …

..in the U.K. …

That would be white boys.

And what about the other end of life?

What about when through illness, accident or age I am no longer a net economic contributor to society? Is my life no longer valuable? Would I be better off dead?

If as a society we are moving away from the premise that the beginning and the end of life is valuable. Then we really need to talk about what makes human life valuable and who defines that.

The medics who care for the unborn children of our land are asking, “why shouldn’t we factor a child’s likely economic impact into whether or not we continue a pregnancy?”

What is your response to them?

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