Why I Shared THAT Story
Hello everyone. I am very aware that I’ve used a big click-bait title for this weeks post, but I am not going to apologise for that. The subject of the story I referring to is one that is very close to my heart and something I have often gotten on my soapbox about in the past.
The story in question was one I saw on Facebook last week and can be read in full here.
If you haven’t clicked on to read the article (why on earth not, go back and do it now!) I can tell you it is about a young man in Ireland who has just passed his driving test. The significant thing about this young man is he has Down Syndrome.
As you may know if you know me or have been a reader of my blog for a while, I work one day a week supporting adults with learning disabilities. Many of these adults have Down syndrome and I have a huge amount of affection for these guys. I have written about them before in posts such as I fell In Love With Peter Parker.
Of all the individuals I support at work with Downs, approximately a third of them live with adopted parents. In my opinion these guys are the lucky ones. Their birth parents may not have kept them for whatever reasons (it is not my place to judge) but these guys were given the opportunity to live.
Facts and figures about Down Syndrome Diagnosis
- Every year in the UK 75,000 women are offered tests to detect Downs prenatally.
- The current amniocentesis test for Downs can result in miscarriage for 1 in 100 pregnancies.
- 60% of women accept this test.
- The amniocentesis test is 90% accurate.
- 90% of mothers who receive a positive for Downs result terminate their pregnancies.
There are many reasons why mothers take this decision. It is not an easy thing to do and I do not stand in judgement of anyone.
Actually that is not true, I think the health professionals that are supposed to support parents following a positive diagnosis often fail them miserably.
Parents have to be given the facts about Down syndrome, such as the health implications; possible thyroid problems, possible heart defects and the likelihood of some level of learning disability, but often these are the only facts given to parents. A very negative future is presented to them with no mention of the positives that can come from having a Downs child, or the positive, normal things adults with Downs can and do achieve these days.
This article – A Letter To The Doctor Who Said I should Abort My Baby is just one I have come across that highlights how bad the medical profession can portray a future as a parent of a Downs child.
It is no wonder that so many parents chose to abort when the only information offered to them reflects only on the possible difficulties their child and family could face. There are many possible factors that influence the decision of the 10% of parents who continue with their pregnancies. I wonder how much the knowledge that they could be one of the 10% who have received a false positive result figures in that decision.
You may be wondering why I pose such a question, well there is a new test on the block for Downs. Non-invasive Prenatal Testing (NIPT) involves a simple blood test for the mother. It relies on the fact that DNA from a growing baby will be present in the mother’s blood stream. This DNA can then be tested for Downs. The test is over 99% accurate.
At the present time the test is only available in private practices, but if it were to be introduced by the NHS it has severe implications for those with Downs. The likelihood is more parents would accept a safer test, and they would have more confidence in the results being accurate.
How does this all relate to THAT article?
As I said before, medical professionals whos role it is to support and offer advice to parents who have received a diagnosis of Downs can often present a negative prognosis for baby. However this is not a balanced view. In recent years the lives of people with Downs have improved greatly. They are now receiving better healthcare, so are living longer, are going to mainstream schools and getting properly educated and are playing an active meaningful part within the working environment and society in general.
The people who can claim credit for these advances are the awesome parents and carers. I am in awe of the way they fight for improvements and inclusion of their children.
But everyone can play a part in bringing about a better, fuller understanding of the potential of these guys and they can do that by reading articles and watching programs. So whenever I find a positive article such as the man with Downs who has passed his driving test on-line I share the hell out of it, and there are plenty of stories such as the one at the start of this post that describe the brilliant things people with Downs can achieve.
In This article, a brilliant Downs advocate Hayley Goleniowska explains what life is like for her 12-year-old daughter with Downs.
This article is about France Gillett. At 75 she is believed to be the oldest living person with Downs, disproving the idea that all people with Downs die young.
This article dispels some of the myths about Downs and highlights some high achieving individuals such as the american actress Jamie Brewer and an Argentinian kindergarten teacher Noellia Garella. Both of these ladies have achieved success in their chosen careers despite having Downs.
I believe that by sharing stories people can help develop a more positive balanced view of people with Downs. They can see that they can live exciting, happy, creative, fulfilling and above all ‘normal’ lives.
It is my hope that if people have a better understanding of the possibilities and potential of people with Downs, then maybe if they ever find themselves in the position where they receive that diagnosis they will not be quite as fearful of the future.
and something else……..
This was where I was planning on ending this post when I drafted it the other day, but since finishing my first draft THIS article came to my attention over on Facebook, and I would be mad not to mention it as it completely underlines the points I have tried to make in this post.
Sally Phillips is a mother of a boy who has Downs and has made a documentary for the BBC called “A World Without Downs Syndrome” about the new Downs screening. The Guardian article tells how the program (which I look forward to watching) has already been criticised as by a leading antenatal specialist as being unhelpful for offering confusing advice to parents.
This attitude astounds me. how can it be wrong to let people know the positives as well as the negatives for people with Downs. It is the only way for people to get an informed balanced understanding of how the condition can affect people.
Earlier in this post I asked how the improved rate of accuracy in the NIPT would affect termination rates for babies prenatally diagnosed with Down Syndrome. The Guardian article gives a frightening answer to that question.
In Iceland the introduction of the new screening technique has led to a 100% termination rate for Downs babies.
I confess when I read that statistic I cried, I was heartbroken. I’m not writing that for dramatic affect, but as a true reflection of the ache in my heart when I think of all those lives, with all that amazing potential destroyed.
If NIPT becomes available in the UK and other countries, I fear that Downs could be eradicated within a generation. This would be a tragedy and leave the world a far colder less beautiful place to live in.
So there is were I leave this post. It was my aim to finish this post on a positive note about how lovely it would be if in years to come articles about the achievements of individuals with Downs stopped appearing in the news because the achievements became common place.
However after reading the Guardian article I am now finishing it on a much less optimistic note.
Have you had any experience with this issue? Do you think I am being over dramatic in my fear of NIPT?
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