Sunday, 31 January 2016

Losing Down's syndrome?

This is Ella at 2 days old, snuggled with her daddy.  
Loved and protected.
All that she knew and all that she needed.



And in so many ways, I wish we could keep her just like this.  For the older she gets, our ability as her parents to protect her and keep her safe and happy will continue to slip through our fingers. 

And I feel the need to protect her from so many things as she grows...

From others
From stereotypes and ignorance 
From society 
From Science 
From learning that she is not deemed equal to others 
From the difficulties of living with being different 

You can't have missed the recent news that the new non invasive pre-natal test (NIPT) for detecting Down's Syndrome (as well as other chromosomal abnormalities) is to be introduced into the current NHS screening programme.  It has been available privately and at a price for some time now, but is soon to be offered to any woman with a greater than 1 in 150 chance of having a child with a chromosomal problem following the results of current testing procedures (Nuchal Translucency scan and triple blood test). I am sure we will see its use becoming more widespread in the next few years, potentially being offered to every expectant mother over time. The simple blood test can be performed earlier in the pregnancy and provides more accurate results than other tests currently available.  It will reduce the need for invasive screening measures, such as CVS/amniocentesis as there is a miscarriage risk associated with these procedures.  There is also the cost savings for the NHS related to doing fewer invasive procedures. All good so far.   

The issue for me and many others, is with how the information these new tests provide will be used. It is also a question of ethics and whether this test borders on a modern day eugenics, last seen in practice in Nazi Germany.  A world without Down's Syndrome may not be far away.  And, unfortunately, the media, medics and scientists would have the world believe that this is something to strive for. That this 'debilitating' 'disease', a 'burden on society', that people 'suffer' with will be once and for all eradicated. 

And this makes me desperately sad.  Sad that Ella's life is deemed to be of less value than others, that people think she suffers or that we suffer for having her in our lives. Sad that they may look at her and see a burden and sad that society doesn't value difference, diversity or appreciate what people with Down's Syndrome bring to their families, schools, communities and to the world. And what message is society sending to those with Down's Syndrome, who read the papers and watch the news themselves? 

The medical profession holds all the power in this situation, turning a women's right to choice into a decision they are so often rail-roaded into following incorrect, out of date and negative information and advice. There needs to be a change of approach and better education for medical professionals dealing with pregnant women undergoing screening. I am pro-choice but recognise that women need to be given accurate, unbiased information in order to fully understand the choice they are making - and that is unfortunately not happening now. In the UK a reported 92% of pregnancies where the baby is confirmed to have Downs Syndrome end in termination (693 terminations in 2014). In other countries, Denmark has reported it may become one of the first populations without a person with Down's Syndrome 'in the not too distant future'. This is most likely due to its >90% uptake of pre-natal screening. In 2012, Iceland had already not had a baby born with DS for two years, again due to prenatal screening uptake rates. 

Most shocking of all is this. In UK law, the cut off for abortion is 24 weeks. If the baby is found to have a 'severe handicap' then it is legal to terminate the pregnancy up to 40weeks, something I've only recently learnt (in Holland this extends to after birth under the Groningen Protocol).  Reasons for these late abortions have included cleft lip, club foot as well as Down's Syndrome.  Not exactly conditions that are incompatible with life. In 2014 12 late term abortions took place due to the baby having DS. 

I don't even want to contemplate how or why this happens but along with thousands of others signing a change.org petition, I'd like to see a change in the law regarding late abortions. I have signed because I believe babies with Down's syndrome should have the same right to life as others. 

I would be very grateful if you could take a couple of minutes to sign the petition yourself - you can do so here


There is also an international petition that you can read more about and sign here:



And here is Ella, still snuggled with her daddy (and her little sister) just this week. Still protected, still loved and thankfully oblivious to both the existence and impact of her one extra chromosome.  

All our lives will always be better for having her in them xx







7 comments:

  1. Hi Amy, stumbled on your blog via Twitter, such beautiful blog and heartfelt post, petition signed x

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  2. Thank you so much Jo, means a lot xx

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  3. Such a gorgeous pic, gorgeous girls, totally agree with your sentiments and have of course signed. Thanks for linking up with BritMums x

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  4. This law is the one thing we really must change. Even midwives cannot believe it is so archaic.

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  5. Hi Amy
    I've been reading your blog for a while now and would like to say thank you. Since having my son, Tristan, who happens to have Down's Syndrome I've found your words hugely encouraging. I've also loved seeing the beautiful pictures of Ella and the rest of the family, which in themselves say a thousand words. I've finally been spurred on to write a comment after reading your most recent post about NIPT. You have written so eloquently about the issues related to this. Sentiments that I share entirely. I too am pro choice but know from bitter experience that there is absolutely no informed discussion about the current pre-natal testing that has been in place for decades so I hold little hope for a change on the horizon. I say this as being not only pro choice but pro NHS, being a nurse myself. I dream of a coordinated approach where Midwives work collaboratively with Specialist Health Visitors and/or professionals from Specialist Education so that a truly informed discussion can take place. Realistically however I don't see this happening which saddens me because it further reflects societies view that the life of a person with Down Syndrome cannot be of value. Tristan's life has value. And our lives are enriched for having him in it. Needless to say I have signed the petition. I simply can't accept that with the advances in modern medicine and approaches to education that Down's Syndrome represents such a profound physical and mental handicap that a person with it can be considered severely disabled.
    Keep writing Amy!

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  6. Thank you so much Anna and for signing the petition too. I too am a nurse and love your idea of a multi disciplinary approach to pre natal screening results, maybe one day it will happen. As you say, change will unfortunately take time but a start has been made - small steps and all that! And our belief in our children deserving the same rights as others will never waver. I hope Tristan is doing well and I'm touched that I've been able to help with my pictures and wafflings! Take care Amy xx

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  7. Ive only just found your blog but I am enjoying reading it.
    We chose not to have the testing both times , currently due Nov. Our reason being that my BIL has Down's syndrome and even if the test showed high chances we wouldn't choose to do anything about it. Yes the 'plan' would probably change slightly but the baby is in no way less of a person. I hope ive manged to get my point across. Im not the best at explaining things.

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