Friday 17 April 2015

I'm hoping for an ASD, ADHD, Down's and Spina Bifida Baby......



Because all parents-to-be, when starting trying for a baby, hope their offspring will be as healthy and happy as possible. Because we are human, because we associate good health and happiness with wellbeing and they are surely two of the most important gifts to bestow on anyone. Surely that can't be controversial?

And equally, once that tiny bundle arrives in your arms, you love it unconditionally, and want the very best for your child. It doesn't matter what peaks and troughs there are ahead on the roller coaster of life, you're in it for the long haul and are your child's fiercest advocate. Irrespective of anything. And that shouldn't be controversial either.

So why, when you merge these two broadly acceptable scenarios together, is there SO much controversy created? Why, when there might be a new, earlier ( 8 weeks) and more reliable test for Down's Syndrome, is this viewed as a problem?

I guess one (good) reason is the idea many have that a disability is always a problem. As was (correctly) pointed out to me recently (and as I obviously am acutely aware since I have children with chronic health issues and deal with disability here) having a child with a testable genetic condition does not mean they will suffer. Of course it doesn't, and if you ever think that is the case, you should check out the excellent blog Down's Side Up written by Hayley Goleniowska, an inspirational advocate and campaigner for her daughter and those with Down's Syndrome. And as the Blog "Saving Down's Syndrome" clearly says, times have changed and the prognosis for the majority of kids with Down's has changed.

But for every parent in a position to embrace potential chronic ill health there are those who would struggle hugely, potentially failing to meet that child's needs or their own in the process. And that's just hard luck most of the time. You make a choice to conceive a child and you take what comes, goodness knows having the opportunity to pick a "designer baby" is utterly abhorrent, giving parents a say on gender, personality, eye or hair colour should be prohibited.

But there are two key reasons why I do not think this new test should be controversial.

1) The current situation is unacceptable. Too many healthy babies are aborted whose amniocentesis test incorrectly points to being positive for Down's Syndrome. A friend of mine's mum used to work in a well known local maternity hospital, counselling parents who were in the appalling situation of considering a termination. She knew too well that sometimes babies with no health issues were accidentally labelled as having Down's. Amniocentesis carries a 1% risk of miscarriage (at least) and is not 100% certain. It is also, crucially, far too late in my opinion to be considering a termination. Babies are surviving earlier than ever and the legal gestational age for abortion (24 weeks) really ought to be brought earlier. But parents understandably need time to consider such heart rending decisions.

The new test would happen earlier, give parents-to-be the same choice earlier, and more safely. It might therefore mean that more babies with Down's are aborted, because terminating a pregnancy which has barely begun doesn't have the same level of emotional involvement as ending one half way through.

2) The world is moving on. Science is progressing and increasingly parents-to-be DO have more choices to make. If they want to. What matters is that they really understand that choice, which at present I suspect many don't. (The NHS isn't great at providing that additional supporting information on most things, let's face it, so there is probably a great deal of "catch-up" required.) But no parent-to-be should ever feel guilty about deciding on a termination on health grounds. We live in a free society where individual choice and parental responsibility is expected and respected.

That choice has NOTHING to do with rejecting individuals already born, and absolutely nothing to do with a lack of support for those struggling with disability on any level. You could be a staunch advocate for a child with a genetic health condition and go the extra mile to make sure their future was assured - but still make a decision that you would not actively decide to bring another child into the world with the same diagnosis.

And yet when trying to suggest this I was torn apart recently on social media, as if I was somehow advocating genocide of all children with Down's Syndrome, or suggesting that they didn't have a good quality of life! The reality for children already born is completely irrelevant to my point of view. I accept that offering such a choice to parents is perhaps suggestive of those with Down's Syndrome being undesirable in some way, but that's not at all my point.

I didn't have the screening blood tests with any of my pregnancies - because I would not have made a decision to terminate under any circumstances those tests might have precipitated. As it turned out, I have children with chronic health issues and disability of a different kind, not issues that could have been tested for, and thankfully not situations which are set in stone. But I was offered a screening choice, and turned it down. I'm not sure how impressed I would have been had I known there was such a choice, but I had been denied it.

As an Aunt to a child with profound disability and learning difficulties I have seen the MASSIVE impact this has had on her family over the past thirty+ years. Her parents are retired, yet are full time carers, day and night, for all her bodily needs. They are an utter inspiration and once their child was born would not have had their reality any other way. But had they been given the option before she was born to take the long view and consider whether they were prepared for 50 or so years of full time caring they might have balked at their future, of a life utterly dependent on her full time needs. I know they would have at least appreciated that opportunity to have a choice.

So let's not glorify disability, confuse choice with prejudice, or meeting needs with celebration of difference. Normalising disability is important, removing discrimination essential but accepting that whilst science facilitates those with chronic and profound health issues to live full lives, it also offers future parents a choice. For some parents, being offered a choice is crucial. And as long as that is an informed one I don't have a problem with it at all. And it certainly shouldn't be a cause for controversy.

32 comments:

  1. When I was pregnant I told the midwife I didn't want tested for Downs Syndrome etc as it wouldnt matter if my child had a disability or not they would be my babies regardless and I would love them the same x

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  2. Angela, I love your comment. Wish everyone had that attitude :/ For some parents, being offered a choice means they will say no to a girl. Is that the same argument?

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    1. But that shouldn't be a choice and isn't at all the same argument.

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  3. This is a really interesting and thought provoking post with some really valuable insights. Your final paragraph sums it up beautifully.

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  4. This has really got me thinking, a very interesting post. Thank you.

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  5. This is a really interesting post - I have never been in a position where I need to decide if I should take the test or not. But I can see why some people do take it and do abort when the child could have a disability. x

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  6. We had the blood tests, but luckily the results were good. I'm not sure what I'd have done if they hadn't have been. Would have been a tough call. Certainly don't think it should be an automatic, unthinking decision.

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  7. I chose not to have the test because I felt it would be too late. Had it been offered to me sooner I think my decision to have the test would have been different.

    A very balanced post, well done.

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  8. What a lovely thought provoking post. I would think that all these tests are a good idea if only to allow parents to prepare themselves or make a decision about the pregnancy.The concern is they aren't 100% so can cause undue stress and worry. Like you say though not all health issues can be identified from the tests anyway and we love our children unconditionally whoever they are xxx

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  9. A really thought provoking post, im not too sure where I sit on the whole issue of testing, I am glad there is the option to have the tests though x

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  10. Extremely well written post. I think that often people have made up their mind on a topic before they read/listen to an argument and they jump in without listening properly to any nuances. That's possibly one of the dangers of immediate social media interaction.

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  11. hmm I didn't test as the outcome would be irrelevent by then but you say many children are aborted with a wrong diagnosis of Downs - how do you statistically know this? I'm not anti abortion in any way and think parents need all the information available.

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  12. I am with Angela I didn't want the choice as knowing would have made no difference. But I agree with you earlier testing would be much more beneficial because let's be real not everyone does feel that way - or are in a situation where by they could look after a child (or another child) with additional needs and they should have that choice.

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  13. I totally agree that the abortion time needs to be lowed. Many babies are born and survive at 24 weeks x

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  14. 24 weeks still shocks me that you can have a termination .. I have seen babies born this early survive out of the womb ..shocking

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  15. This is a hugely emotive subject, and so much judgement around regarding the choices and decisions that parents make. I personally believe that these are very individual choices and decisions, and that as there is no way that I know enough about someone else's life to fully understand the reasons behind their choice (whatever that may be), I cannot really comment on them, let alone judge them for it. Having said that, I think that testing - whether screening or diagnostic, invasive or not - is an important component of maternal and prenatal care. Whether an individual decides they do or don't want a test, whether a result means they do or don't go ahead with a pregnancy - I think this is absolutely up to them, but it is important that choices and decisions are made from a point of awareness, of recognition of the risks and further decisions that might be necessitated on receiving the results. I don't think it is acceptable that every time a diagnosis of (for example) Downs Syndrome is made there is an assumption that the pregnancy will be terminated - I think someone with excellent interpersonal skills backed up with accurate medical knowledge talks to the parent/s, discusses their options and supports them in whatever decision they make. I think the earlier and more accurate and reliable (and less hazardous) a test is, the better - simply because these decisions are difficult enough, without the added pressure of being unsure how accurate the information is that you are including in your thinking.
    Sorry, lots of waffling!
    Lucas

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    1. Not waffling at all Lucas, and thank you for taking the time to comment. I agree with you!

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  16. Such an emotive subject but ultimately people should have the choice to decide what's best for their family. I would also like to see more information given to parents-to-be about the lifelong implications of their decision making (both ways), having cared for adults with learning difficulties I've seen so many parents of young adults feel the need to place them into care due to some of the behaviours that are mangeable at home with a young child but not so much with ageing parents and grown up children. I guess we all see these things from the angle that we have experience or can relate to first and foremost x

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  17. This is very interesting issue and you write about it in a very measured way. I too chose not have screening tests when I was pregnant but I fully respect parents who do have these tests. It's vital that parents who are expecting a baby are fully informed about these matters so that they can decide what's best for them.

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  18. I firmly believe that these choices are those of the parents and no one else. Nobody can judge another person on their life decisions, because no one lives their life.

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  19. if i could hug you i so totally would, i am currently 15 weeks pregnant and was asked if i wanted the test doing, i felt physically sick that someone could even ask me if i wanted (in my opinion) a test to determine whether or not i wanted to keep my un born baby or not, i also believe that those who are able to give birth to a healthy or non healthy child is totally blessed and should love that child no matter what and should not have the choice beforehand whether they feel that if that child may have the possibility of having a disability or some sort of defect, that god forbid then decided because it was not perfect to abort it, having the choice for those who do need those tests for their ow medical and health concerns , those who may struggle due to their own health or dissability not those who are capable but feel they should have the perfect baby so to speak, i have refused the test, this is my own choice, im mum to 7 this will be my 8th and so far i have been lucky but if this ws not so then I am sure i would cope with the challenges either way i would love it and that is all that matters

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  20. I have had two high risk pregnancies where I have had to undergo an amniocentesis and a CVS to test for Downs Syndrome. It was a horrendous experience and I am thankful for two healthy babies but it was important we had them as having a diasbled child an have a huge impact on the family and we wanted to make an informed decision

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  21. Good post! Like you, I wouldn't have terminated a pregnancy because of a potential disability, but I chose to have the tests because, for me, forewarned is forearmed and I would have coped better if I were prepared for the possibility. Just my personality! Popping over from #MaternityMatters

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  22. A jam-packed-food-for-thought post on a very difficult issue. I'm not sure what to write really, I find myself mulling over your last paragraph. I'm pinning your post. Thanks for sharing and getting us thinking.

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  23. This is such a great post - really interesting and putting all the facts out there. Thank you.

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  24. The choice belongs to parents and we shouldn't judge; these are very difficult choices for every parents to be and they and only they should make it.

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  25. Termination is such a difficult choice, no matter what the stage of gestation. But I agree, the sooner the better if it has to be done.

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  26. Oh this makes me feel sad :( Mummy was 40 when pregnant with me. Her consultant said that it depended what she would do, if there was a higher risk of Downs - Mummy knew that she would keep me and love me, whatever the case. So she didn't have any tests. And here I am :)

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  27. What shame that you were ripped apart for trying to explain your position on it all. We are all entitled to our opinions after all, whether we they are agreeable or not. I think I see where you're coming from too, its an interesting discussion. With all of my pregnancies, I've had the nuchal fold tests at 13 weeks and never needed to think any further about testing. I've always said I wouldn't test but I guess you never know until you're in that position.
    Thanks so much for linking to #MaternityMatters x

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  28. Actually if your pregnancy tests positive for Downs Syndrome you can legally terminate at ano point to term. The 24 week limit is irrelevant

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  29. I'd also say it's a huge failing of society that the most vulnerable aren't looked after. That parents like your aunt are left looking after their daughter with so little support.

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Many thanks for taking the time to comment, I really value your responses.

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