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?

Scientific Fact* Anxious Dragons feed on blog comments. Please help keep this dragon well fed. Thank you Xxxx

*Possibly not true

68 Comments

  1. myzania

    January 10, 2017 at 1:30 am

    Wow. Thanks for writing this article – I’m going off to look at links now. I feel strongly about this for personal reasons, having a disability that is a spectrum one. I’m only mildly affected really, but others have it worse. Due to this, I believe that when I was diagnosed in-utero, at least one doctor told my parents to terminate. They turned to their faith instead and here I am.
    I’m a “both and” rather than “either or” sort of person and I feel that it’s often lacking in these sorts of debates (though you and other commenters have done well in avoiding that – gah, sorry if that sounds patronising). I think that more information about the positives needs to be given and am wary of initiatives that would have the potential of forcing (by attitudes even if not by laws etc.) women to choose to terminate. At the same time, it’s great that a less risky test has been developed for those who do want to know. I’m pro-choice, in a “I’d never, but it’s your decision to make” way. I struggle with this belief at times because I also believe that life is precious – but I just remember the “your choice not mine” mantra.
    I do feel a bit icky whenever this sort of thing comes up though, as there is quite a lot of ableism within society. This causes things such as disabilities to be seen through the medical lens, as “problems to be solved”, rather than other models such as the social one, where societal attitudes and barriers are given weight. Balance is key – meaning that choice should be explicit and not forced in any way.
    /end rant.

  2. milliemondays

    January 9, 2017 at 6:28 pm

    This blog has really touched me.
    My name is Emily and I am a drama practitioner, working with adults with Downs Syndrome. The guys that i work with are talented, funny, intelligent and make my, along with the rest of the world a brighter and happier place. I couldn’t agree with your post more. If there was a like button for every single line I would press it ha!

    1. Hooks and Dragons

      January 9, 2017 at 6:30 pm

      Thank you so much. I agree with you, guys with Down Syndrome do make the lives of those who know them happier xx

  3. debsrandomwritings

    October 14, 2016 at 4:56 am

    Hi Tracey, now this is a post that made me stop and think. I was totally unaware of the story about William Loughnane, but what a truly lovely story and all credit to his parents who have done a great job bringing up their son.

    It is sad to think that if (and more likely when) the NIPT test becomes more fully available that people like William will be selectively destroyed. It’s just a shame that with advancing technology there hasn’t been some sort of test created to weed out the lowlives and scum before birth… We can only live in hope!

    #BigPinkLink

    xx

    1. Hooks and Dragons

      October 14, 2016 at 8:55 am

      Yes, the Trumps of this world xx

  4. Petite Pudding (@petite_pudding)

    October 13, 2016 at 8:01 pm

    A very interesting piece – I agree that the information should be presented to parents in a balanced way, so that they can reach their own informed decision #eatsleepblogrt

    1. Hooks and Dragons

      October 13, 2016 at 8:04 pm

      That would be the ideal scenario

  5. Hannah G, The 'Ordinary' Mum

    October 12, 2016 at 9:41 pm

    Such a thought provoking post, I think its very important for parents to be given a balance of information when they find out their child has or may have special needs. They need to know both the positives and negatives however it appears as though the medical professionals are mainly featuring the negatives in their discussions. I do hope that if this new test rolls out fully that health care professionals will learn to have a less biased opinion. Thank you for sharing with #bigpinklink

    1. Hooks and Dragons

      October 12, 2016 at 9:44 pm

      I would like that to happen, but fear it will not xx

  6. Squirmy Popple

    October 11, 2016 at 7:03 am

    It’s so difficult. On the one hand, it’s a good thing for mothers to be as informed as possible so they can make the right decision for their family – on the other hand, the test probably will result in more terminations. I keep meaning to watch this documentary on iPlayer – it sounds really interesting. #bigpinklink

    1. Hooks and Dragons

      October 11, 2016 at 8:00 am

      The key to getting it right is good, balanced up to date information, and that is very much lacking at the moment xx

  7. Silly Mummy

    October 11, 2016 at 12:11 am

    It’s a really complicated and heartwrenching area, isn’t it? I can see elements of both sides of the story, and I think that it is made so much more complicated by the range of severity in the impact Downs Syndrome has on people’s lives, from those who are able to live independent lives, to those whose quality of life is severely impacted, with everything in between. But then maybe the point is that, yes, Downs Syndrome could be very manageable or it could be life threatening or leave limited quality of life, but to an extent that is always true. There are no guarantees. Any child could have learning disabilities, developmental disabilities, physical disabilities, a life limiting condition. There are so many things that can’t be tested for. There is always a full spectrum of outcomes and risks to any pregnancy. So maybe the issue is that it doesn’t make sense to target Downs Syndrome specifically. I don’t know, as I said, I can see both sides of this. I had the nuchal screening and was deemed low risk so had nothing else done. Had I been high risk, I don’t know if I would have had an amnio. Or what I would have done after that had it been positive. I’m not sure anyone knows what they would do or feel until they have to do it. #bloggerclubuk

    1. Hooks and Dragons

      October 11, 2016 at 12:28 am

      Yes its not an easy subject, and I know that I am biased, but with that bias comes a great deal of knowledge about the condition. The health risks associated with Downs are very treatable these days, and it is clear now that the limited life span of someone with Downs 20 or 30 years ago was far more to do with poor/limited medical treatment than the actual condition itself.
      Quality of life is a difficult one as its very subjective. From my own experience I can say the people I know with Downs (these are predominantly guys who fall on the moderate to severe learning disabilities end of the spectrum, the worse ones) enjoy life. They are happy and content with their lot. They are not a group of people you meet and think these guys are suffering (as opposed to other disabilities where the person does seem to suffer). Xxx

  8. A Mum Track Mind (@amumtrackmind)

    October 10, 2016 at 10:07 pm

    To be told that there is a high chance that your baby will be born with any special needs must be a very difficult thing to go through. I suppose medical professionals are there to provide the facts as they know them but it would be good if they could present a more neutral set of facts and allow parents to see the positives and negatives like you say. Thanks for sharing such a thought provoking article on #fortheloveofBLOG x

  9. Topsy Turvy Tribe

    October 10, 2016 at 9:13 pm

    I had a similar test piloted at my local hospital. I was 100% certain I would not have a Downs baby as I did not want a burden on my eldest child. Ultimately it is personal choice and we have to respect that #bigpinklink

  10. Back With A Bump

    October 10, 2016 at 8:18 am

    I read this and commented last week on another linky. Thanks for coming and sharing it with us on #marvmondays

    1. Hooks and Dragons

      October 10, 2016 at 8:36 am

      Always a pleasure x

  11. Lisa Pomerantz

    October 9, 2016 at 9:05 pm

    So much in this world is scary today Tracy. I bet the doctors or researchers who came up with this test feel mighty pleased with themselves and have received huge accolades. We are quite fortunate to have two healthy girls. Not everyone is as such. We did not test for anything during both pregnancies because we knew that we wouldn’t do anything to change the outcome. This is sad news. Sending you a huge hug. #momsterslink

    1. Hooks and Dragons

      October 9, 2016 at 9:10 pm

      Thank you honey. It makes me sad because I have first hand knowledge of what amazing people they are. The idea that someone is sitting there and weighing up the value of their lives is horrible xx

  12. Jane Taylor

    October 9, 2016 at 9:08 am

    I watched the documentary by Sally Phillips. It was a very moving programme and Hayley’s impassioned speech to healthcare professionals about her experience moved me to tears. It is such an emotive issue. I agree that folks should be provided with all of the information, good and bad so they can make informed decisions. As a Christian, I believe in the sanctity of life, but it would be heartbreaking to be delivered the news my unborn child had any kind of medical problem but as Sally said, they are a person, not an illness and there are so many positives and so much joy their Downs son has brought to her life….HEalth professionals really do have a responsibility to give balanced and detailed information to parents given that diagnosis. Also, with regards to screening…How far will it go? What other conditions will they check for….How many of us wouldn’t be here if risk of Alzheimer’s, cancer etc was screened for? I could go on…Thanks for sharing. #fortheloveofblog

    1. Hooks and Dragons

      October 9, 2016 at 9:17 am

      Yes I find the potential risks of advances in screening quite scary.

  13. aliduke79hotmailcom

    October 8, 2016 at 10:19 am

    This is a great post. In my experience, there is not enough information given to parents about any disability or special needs. If there were more information available things could be a little different.
    #fortheloveofBLOG

    1. Hooks and Dragons

      October 8, 2016 at 11:08 am

      No, it is a sad state of affairs that needs to be addressed xx

  14. thefrenchiemummy

    October 8, 2016 at 9:48 am

    It’s such a personal choice… I am not sure I would have done the test if it happened to me as it could have side effects. I don’t think people should be judged if they decide to abort. It’s a lifestyle change… #fortheloveofBLOG

    1. Hooks and Dragons

      October 8, 2016 at 11:00 am

      Believe me I am not judging any mother who makes that decision. My only wish is that they be given balanced, properly informed information in which to make a decision. More often than not, this is not happening at the moment x

      1. thefrenchiemummy

        October 9, 2016 at 8:14 pm

        I didn’t mean you were judging anyone, sorry. I mean that sometimes , some people do judge those mums. #EatSleepBlogRT

        1. Hooks and Dragons

          October 9, 2016 at 8:17 pm

          Yes, unfortunately people do that xxx

  15. nightwisprav3n

    October 7, 2016 at 1:15 pm

    I read another blog post yesterday discussing this test and how controversial it is. There are definitely pros and cons to this and I also believe in pro-choice. My choice is that I won’t abort a child because of a test result but I understand that others may feel differently. Since my son’s Autism diagnosis I have read many, many articles and have been sent many. One topic that keeps coming to my attention is scientists developing a pill to help “cure” Autism. For parents of children who have more severe Autism and have a lot more struggles than I do, I can understand if a pill is something they would want for their child but when people ask me if I would choose that for my son, I say “hell no!” Like you said about people with Down’s Syndrome, they bring color and a bright light to a cold and dark world. Why would I want to douse that? I see my son as a beacon and an inspiration to me and everyone around him. I would never try to change that but again, this is a sticky topic because different people believe in different things and there really is no right or wrong answer here. Thank you for bringing this to our attention. I have only know a few people with Downs Syndrome and didn’t know them very well but I have seen many of them overcome their challenges and live a long happy life. The rest of society just needs to stop being so concerned with physical perfection and open up to all other amazing possibilities the human race has to offer. Popping over from #momsterlink

    1. Hooks and Dragons

      October 7, 2016 at 5:32 pm

      I can understand why some people might seek a ‘cure’ for autism. I have experience of a large number of autistic people (through work, family and some friends). It is one of the few conditions I have come across where I have seen a small number of people who really do appear to suffer as a result of the condition.
      I dont see people with Downs suffering because of the condition. Sometimes they are frustrated by the reactions of other people to their conditions but that (in my view) is a different thing.
      You are right, there is no complete right/wrong in this situation but there does need to be far better information

      1. nightwisprav3n

        October 7, 2016 at 6:42 pm

        I absolutely agree that we need more information and it’s wrong for doctors to push one view onto an expectant mother and not another.

  16. acornishmum

    October 7, 2016 at 12:22 pm

    I didn’t have the test with either of my children, to me they would be my children no matter what, but I an understand people wanting to know and be prepared in advance. A more accurate test could be a good thing in this sense…. but sadly I suspect you are right. A really tricky one.

    Thanks for linking up to #PicknMix

    Stevie x

    1. Hooks and Dragons

      October 7, 2016 at 5:25 pm

      I agree that people have a right to know and a right to make whatever decision is best for them, i simply wish they were making a fully informed decision, rather than one based on the worst case scenario xx

  17. mrssavageangel

    October 7, 2016 at 9:10 am

    Its a controversial subject any way you slice it. As the mother of a disabled son I can absolutely see the positives of having a multitude of differences in our society. But I am also vehemently pro-choice and if a person does not want to parent a child (and beyond into adulthood) with a disability, particularly one that can tested for, well then that has to be their decision. An informed one yes, always, with both sides of the coin explained thoroughly. Best and worse case scenarios. But their choice none the less. The NHS wouldn’t be forcing women to take this test, and not all will. And that’s great as it’s their choice. But a safer test, with greater accuracy, is better for those who *do* want to know (and would have wanted to know before the NIPT was introduced). I don’t believe it will lead to a higher termination rate. I hope it would lead to families being able to prepare for the arrival of a child that will need parenting maybe a little differently and give them time to find others in their community who will support them in this. Such as yourself! #picknmix

    1. Hooks and Dragons

      October 7, 2016 at 9:46 am

      I agree choice is the most important thing, but I would argue that although women are not forced (yet) to take the test, from the tales I have heard online and from older mums I know, doctors very strongly recommend people take the test and will often ignore a mothers decision not to take it and push for them to be tested again and again.

      1. mrssavageangel

        October 7, 2016 at 9:59 am

        Well I do hope that’s not the case. It certainly wasn’t my experience as a mother in her 30s but everyone’s experience is unique and there seems to be little parity across healthcare trusts!

        1. Hooks and Dragons

          October 7, 2016 at 10:04 am

          Im glad there are healthcare trusts that dont put that pressure on mums, that is good to know x

  18. Heather Keet

    October 6, 2016 at 8:24 pm

    Thank you so much for sharing your knowledge and love with people who may not interact with people who have Down’s Syndrome. I think education and awareness are the dos important tool we have and you are completely right, giving only a one-sided point of view will influence people to make decisions they may later regret. My mother-in-law was told by doctors to abort her third child when prenatal testing told her he would have Down’s and lead a less than full life. Today I have a wonderful 30 year old brother-in-law who does NOT have Down’s and I can thank her reaching out to other people for knowledge and not just listening to one person’s recommendation.

    Thanks for linking up with #momsterslink and I hope I’m doing justice as the guest host!

    1. Hooks and Dragons

      October 6, 2016 at 8:39 pm

      Your mother in law made a very brave decision, its hard going against the advice of doctors. Im glad she did, your brother in law would have been equally wonderful even if he had have been born with Downs.
      And you will be a fantastic host 😁xx

      1. Heather Keet

        October 6, 2016 at 9:05 pm

        I’m glad she need the decision also, back in the 1980s I can only imagine how much harder that decision was when there was no Internet to help you research other opinions.

        1. Hooks and Dragons

          October 6, 2016 at 9:14 pm

          Yes, Downs children were far more excluded then. They were stopped from going to mainstream schools until 1981

          1. Heather Keet

            October 6, 2016 at 9:15 pm

            I’m so glad we’ve come so far, but we still have a long way to go!

          2. Hooks and Dragons

            October 6, 2016 at 9:29 pm

            We have, but will we take the oppotunity to let these fabulous people develop and enrich our society or will we just decide we would rather have babies that are not ‘faulty’

          3. Heather Keet

            October 6, 2016 at 10:01 pm

            I hope people choose to see that faults are a thing of nature and by trying to eradicate them we might end up with something else entirely.

  19. helen gandy

    October 6, 2016 at 8:16 pm

    Always going to be a controversial topic and while I agree for the most, if I was in that situation though I don’t really know what route I would head down….Very well written post, thanks for linking up! #bestandworst

    1. Hooks and Dragons

      October 6, 2016 at 8:36 pm

      I appreciate that I am in a quite unique position. With the extensive experience I have of Downs (the bad bits as well as the good) it isnt something that I would fear. I appreciate that its a personal choice, I just wish it was a choice based on a more balanced presentation of ALL the facts xxx 😊

  20. Rhyming with Wine

    October 6, 2016 at 4:51 pm

    This really opened my eyes Tracey – as your posts so often do. My first thought was to applaud the introduction of a non invasive and highly accurate test, but I absolutely see your point. I believe that all parents should be given the facts wherever they are available (if they want them of course) so that they can make an informed choice. You are of course absolutely right though in that the picture which is painted by health professionals leans heavily towards the negatives. It is lovely to read such positive and inspirational stories too. Thank you for sharing x

    1. Hooks and Dragons

      October 6, 2016 at 5:43 pm

      I would not wish anybody to miscarry as a result of having a test, so obviously in that sense a safer test is a real inporovement, but it terrifies me to think what the implications of this will be for the Downs community xx

      1. Rhyming with Wine

        October 6, 2016 at 8:05 pm

        I totally understand and agree with you. Very well written as always.

        Back to share through #momsterslink too hon x

        1. Hooks and Dragons

          October 6, 2016 at 8:06 pm

          Thanks xx 😊

  21. mummuddlingthrough

    October 6, 2016 at 1:35 pm

    To receive news that your unborn child has a congenital defect must be the most devastating news to any parent. Whilst initially I thought the increased accuracy must have been a good thing, as you say, it’s pretty awful to think of all those lost lives. Thanks for highlighting some really insightful and positive stories about Downs Syndrome. There are some really uplifting stories in there.
    Thanks for linking up to #coolmumclub

    1. Hooks and Dragons

      October 6, 2016 at 1:46 pm

      It is a hard thing to deal with, but it doesn’t have to be as devastating as doctors make it out to be.
      80% of people born with downs will these days learn to read and write. Their life expectancy is over 60 today. They can get jobs, marry and live in dependant lives.
      There was a lady on yesterday’s program who could speak two languages, had a job and was engaged. I wish doctors would present these facts too.

  22. crummymummy1

    October 6, 2016 at 8:39 am

    A very thought provoking post. I have a friend who recently terminated a baby for this reason – it’s such a sensitive topic and like you say who are we to judge? Sometimes it’s hard not to though. #twinklytuesday

    1. Hooks and Dragons

      October 6, 2016 at 11:05 am

      I would never judge any parent who makes that decision, but the prognosis given to them is just so negitive. It is not balanced by the huge strides people with Downs have been allowed to make in recent years.

  23. Tracey @ Mummyshire

    October 5, 2016 at 10:07 pm

    Gosh, your final statistic from Iceland was a complete shock – I didn’t see that coming. I think you raised lots of questions (and who knows what the answers are) but ultimately the presentation of Downs has (in my opinion) always been very negative. This needs to change so that pregnant parents can make informed decisions for them, based on facts.
    We were provided with a false positive DS test and the views of the medical staff at the time were appalling. Things do need to change, but it needs to start with personal attitudes as well as professional ones. I think you’re doing a great job raising awareness of this issue
    #BestAndWorst

    1. Hooks and Dragons

      October 5, 2016 at 10:14 pm

      I have just this minute finished watching the program I referred to in the post and I am in tears.
      The overwhelming impression given by the medical profession, antenatal experts, geneticists and even people who advise pregnant women is that Downs is a burden.
      They kept banging on about choice, but presented it as the choice to have a flawed child or to try again.
      I guess its a reflection of societies desire for perfection isnt it (sorry for the rambling response) xx

  24. downssideup

    October 5, 2016 at 1:58 pm

    Thank you for linking up. Such a complex and emotive subject but I am so grateful for Sally’s documentary which has started important conversations.

    1. Hooks and Dragons

      October 5, 2016 at 2:07 pm

      I shall be watching it this evening.
      I am humbled by people like you and Sally. I can do my tiny little bit, supporting the awesome guys at work and sharing everything I can, but you are getting your voices heard on an international stage. You’re simply amazing xx

  25. Not A Terrible Mother

    October 5, 2016 at 6:48 am

    This made me cry, because it is Downs now, and what will it be later? The truth is that life is precious and needs to be protected. All life, not just convenient life. Science has some amazing benefits but some terrible drawbacks when it has us playing God.
    #BestandWorst

    1. Hooks and Dragons

      October 5, 2016 at 8:51 am

      Yes the application of science often goes completely against what it was originally intended for.

  26. Lucy At Home

    October 4, 2016 at 2:20 pm

    100%??! That is shocking and so desperately sad!

    My daughter has a developmental disorder which was picked up on my 20 week scan. I wouldn’t allow the doctors to talk to me about termination because she was still my daughter and we wanted to care for her.

    When she was born, we were warned about a million things that were going to go wrong (e.g. never being able to sit up by herself). She is now almost 6yrs old and she can run and jump and do pretty much everything that a ‘normal’ 6yr old can do. #TwinklyTuesday

    1. Hooks and Dragons

      October 4, 2016 at 2:48 pm

      It is so sad that the medical profession always seem to focus on what can go wrong in situations like this. You have my utmost respect for being strong enough to stand up to them and I am so glad your daughter is thriving xx

  27. Sian QuiteFranklySheSaid

    October 4, 2016 at 1:29 pm

    Wow. I am astounded that so many choose to terminate their pregnancies after screening for Down’s Syndrome. I mean, I am not judging anyone at all for their decisions, but I didn’t expect it to be so high x #twinklytuesday

    1. Hooks and Dragons

      October 12, 2016 at 12:11 pm

      Its not an easy decision to make. I cant help but feel the numbers in some way reflect the negitive approach the medical prefession have towards the condition x

  28. Tracey Bowden

    October 4, 2016 at 9:14 am

    100% that made me sad! What an awful thing to do. I absolutely agree with you. Parents need more support and information. Excellent post

    1. Hooks and Dragons

      October 4, 2016 at 9:31 am

      It is. Parents get told about the health problems, how the child will suffer, but I have never met a Downs person who is suffering because of their Downs. They might be suffering on the day because their girlfriend dumped them, or because they cant go to the Guns n Roses concert, but never because of their condition

  29. Kirsten Toyne

    October 4, 2016 at 8:07 am

    This is a really tough topic. I have hard from friends about this negative barrage from health professionals. You have given me some food for thought. #twinklytuesday

    1. Hooks and Dragons

      October 4, 2016 at 8:42 am

      It really does make me sad. They treat Downs like a disease that needs eradicating x

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