I wont let you Down

What would a world be like without Down’s Syndrome?

A new non-invasive screening technique threatens the extinction of Down’s syndrome.

Downs syndrome is a genetic condition, which often results in some form of learning disability and can often have health implications. It is caused by the presence of an extra copy of chromosome 21 within the individual’s DNA.downs 4.gif

Scientists have hailed this new screening technique (the NIPT) as ‘the most exciting development in pregnancy care for decades’, after published results suggest that this test is safer than invasive prenatal testing and is 99% accurate. The NIPT involves taking a simple blood sample from the mother and exploring the DNA of the unborn child.

Arguably the NIPT can prevent about 350 miscarriages a year, caused by the invasive screening tests (known as amniocentesis). This new test can offer women reassurance about the health of their baby (without having an invasive test), and also allows women to be informed about whether their child may have Down’s syndrome.

However, currently 9 out of 10 ten women who get a positive result for Down’s choose to terminate. In 2014, 693 abortions were performed due to this, a 34% rise since 2011.

Many people have voiced their concern about how this new test might affect the Down’s syndrome population.

downs 3.jpgFor example, in Iceland 100% of women who are given a positive diagnosis for Down’s decide to terminate. This has resulted in the remaining Down’s syndrome population in Iceland feeling undervalued, unwanted and that their lives are not cherished.

I think is clear that if more women are aware of their child having a diagnosis for Downs, then the amount of abortions due to this will increase. While Lyn Chitty (the developer of the NIPT) claims that this test should not significantly chance the birth rate of Down’s syndrome children, it is hard to get past the notion that more increased knowledge of positive Down’s results won’t result in increased termination of these pregnancies.

Whilst I am a strong believer in pro-choice, and that individuals should be informed about the health of their child. I still question whether these women who terminate due to a Down’s diagnosis have been fully informed about the wonderful-ness of Down’s syndrome and what it might be like to live with a Down’s child.downs 5.png

I cannot claim to be an expert on this, but, I do have experience in both the hardship of caring for a Down’s child and the happiness that Down’s syndrome children have. I have previously worked with a child with Down who has limited communication abilities and I have seen the struggle his mother has been through. I have experienced the frustration at not being able to communicate with a child with Down’s. But I have also experienced the extreme happiness and joy that Down’s syndrome children radiate.

Through my work as a special needs teaching assistant I have seen the unique humour of Down’s syndrome children and their ability to make you laugh and smile every day. I ask, what more would you want than a happy child?

downs-6And that’s not the only thing that Down’s syndrome people are. There should not be defined by their condition. They can go on to do incredible things, and live normal lives. Karen Gaffney has Down’s syndrome, and has achieved more than most people. She swam the channel, she set up a non-profit organisation to advocate for Down’s syndrome rights and last year she gave a TED talk on why her life matters (watch here https://www.youtube.com/watch?v=HwxjoBQdn0s).

I cannot say what I would do if I ever got pregnant and was offered this new screening test. And I cannot say that if I had the test, and the result was a positive for Down’s that I would not terminate. But if it happened, it would be my informed choice to make.

I hope that women who have this new test are given the whole story on Down’s.

Love Em (The Little Blogger)

A world without Down’s syndrome – documentary:

http://www.bbc.co.uk/iplayer/episode/b07ycbj5/a-world-without-downs-syndrome

Check out Icelandic photographer Sigga Ella’s portraits of people with Down’s:

Beautiful portraits celebrate people of all ages with Down’s Syndrome

Articles:

http://www.bbc.co.uk/news/magazine-37500189

http://www.telegraph.co.uk/news/2016/03/22/downs-syndrome-people-risk-extinction-at-the-hands-of-science-fe/

Information on Down’s Syndrome and the NIPT:

http://www.nhs.uk/conditions/Downs-syndrome/Pages/Introduction.aspx

http://www.rapid.nhs.uk/guides-to-nipd-nipt/nipt-for-down-syndrome/

http://www.nhs.uk/news/2015/04April/Pages/New-Downs-syndrome-test-more-accurate-than-current-screening.aspx

Karen Gaffney:

http://www.karengaffneyfoundation.com/

https://www.youtube.com/watch?v=HwxjoBQdn0s (All lives matter)

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2 thoughts on “I wont let you Down

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