High risk for Down's

Discussion in 'Second Trimester' started by timtam78, Sep 26, 2016.

  1. timtam78

    timtam78 Well-Known Member

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    Didn't know where to put this so put it here and in pregnancy chat too...

    I've had a high risk factor for Down's at 1:24

    The midwife told me it would have been 1:196 based on my age alone. (im37, 38 in November).

    The nuchal measurement was in the normal range at 2.4 but the two hormones they test in the bloods, one was slightly high and the other slightly low.

    At the mo, thinking of either just doing nothing or carrying on or paying for the harmony test (£345) but that's not 100% diagnostic but pretty much gives you a 99% idea.

    But shocked and just wanna chat with people who've been through this really xx
     
  2. KateK

    KateK Well-Known Member

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    Hi Tim Tam. So sorry you're going through this - what a massive decision to take on. Will your hospital not offer any further blood testing based on your risk? I have heard good things about harmony and obviously it's the non-invasive option (plus I think they can determine gender if you were hoping to know..) I suppose it comes down to whether you 'need' to know or whether you can get through your pregnancy with a maybe. I had a little scare with a higher NT measurement and when looking into it there are a few other soft markers (such as whether a nasal bone is present) so you could look into that if you wanted to.. My risk ended up low so sorry I haven't been through similar but there were a couple of threads in Tri 1 a few months back about ladies in very similar positions so perhaps you could look for those..If I remember rightly most went for the Harmony and ended up with much lower odds based on those results. Best of luck with whatever you decide xx
     
  3. CharlieSmartie

    CharlieSmartie Well-Known Member

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    Hi, we went through this last year.

    I was 32, had a nuchal measurement of 2.7 but the bloods changed my risk score to 1:5 of abnormality. Remember they are testing for some other syndromes too.

    We decided to have a Harmony test done privately which confirmed the high risk score (it's 99% accurate) so then we waited a few weeks for confirmation of an abnormality via an amnio. It was confirmed and we made the really hard decision to terminate.

    In my opinion it's worth doing the private blood test. If it had proven to be low risk via the blood test then we wouldn't have had an amnio, we would have continued with the pregnancy. But having made the decision to terminate if an abnormality was confirmed we wanted to have an amnio to make sure 100%.

    We are pregnant again now and paid to have an early harmony test prior to the NHS screening as I didn't want to delay the process this time, by the time we found out last year we were 17 weeks and that was really really hard.
     
    #3 CharlieSmartie, Sep 27, 2016
    Last edited: Sep 27, 2016
  4. rach4910

    rach4910 Well-Known Member

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    Hiya,
    We had what's classed as a high risk result from our scan, 1:110. Our Nt measurement was higher end of normal range and my bloods were slightly out but not by much. Our hospital offered us a blood test, similar to harmony for free, just called a SAFE test but does the same thing. The blood test gives you more accurate odds, either it turns out to be an almost certainty of abnormality or a 1:100000 chance or less. Ours came back 1:1000000.
    Our hospital offers it for free to those who are classed as high risk. If not then you can pay for it and it's £350.
     
  5. timtam78

    timtam78 Well-Known Member

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    Thanks for sharing your experience ladies...

    So sorry it didn't work out for you CharlieSmartie :( I hope this pregnancy goes well for you.

    KateK we're not finding out the gender (as tempting as it is!) we're staying team yellow like we did with our son :)

    So I just went and had my Harmony test tonight. My local hospital did it, the lady who did my other scans did it actually and she was lovely. Answered any questions/concerns I had. Mine was just the blood test, no scan. It's now sent off to the Harmony lab in London and I should get my result in a week unless they have any delays.

    She told me it was actually 99.8 or 99.9% accurate so it's a pretty certain answer it seems.

    Fingers crossed!!x
     
  6. princessp

    princessp Well-Known Member

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    good luck and please keep us updated. We are also team yellow! Well done on resisting the urge! x
     
  7. timtam78

    timtam78 Well-Known Member

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    I had my results back, it's pretty much a certainty my baby has Down's. I won't lie I am devasted. Can anyone point me in the direction of good support forums for this?
     
  8. honeybear

    honeybear Well-Known Member

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    didn't want to read and run
    I'm so sorry Tim tam
    it must be a massive to process I hope you get the support you need of your midwives but I'm sure your baby will be beautiful and have a loving mum. lots of thoughts your way x
     
  9. Browneyed Girl

    Browneyed Girl Well-Known Member

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    So sorry hun, I hope you find the support you need xx


     
  10. CharlieSmartie

    CharlieSmartie Well-Known Member

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    I'm sorry to read you have had the results.

    I have found ARC to be of tremendous support.
     
  11. Kate1985

    Kate1985 Well-Known Member

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    Hi Tim Tam, I'm sorry you had the results you were not hoping for. I found Facebook groups really helpful and supportive. I didn't have a ds diagnosis but I had spina bifida diagnosis at my 20 weeks scan. Please feel free to pm me if you want to chat. X
     
  12. princessp

    princessp Well-Known Member

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    It's perfectly ok to feel devastated. I don't have any advice in relation to forums etc but wanted to say sorry the results are not what you wanted and hopefully you will find the right support. If there is anything this forum can do, use us.

    at least now you know what is ahead of you and you can prepare. xxxxx
     
  13. Browneyed Girl

    Browneyed Girl Well-Known Member

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    Hope this isn't inappropriate but you might want to watch the Sally Phillips documentary that was on the other day 'A World Without Down's Syndrome?' It might help with seeing real life experiences of children with Down's xx


     
  14. Holi

    Holi Well-Known Member

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    I have just watched this and found it incredible and so informative - I would suggest giving this a watch also. In fact everyone even considering having a baby should watch it!

    Hope your ok timtam and really hope you find the best support possible going forward - Sending lots of love x
     
  15. CharlieSmartie

    CharlieSmartie Well-Known Member

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    I watched it but had a different opinion. It was extremely biased. She tried to make out she was going to be assessing the 'new' NIPT testing....but didn't even mention the fact that
    1. It's optional
    2. It assesses for other syndromes
    3. A better level of accuracy should only be seen as a good thing!

    She did not interview/show children with Down's Syndrome which had more severe issues, she only showed high functioning DS children like her son. So where were the interviews showing the other side of being a parent with a DS child?! Not exactly a very balanced documentary.

    She herself did have screening but was told it was low risk and then found out after birth that her son had DS. How does anyone know how she would have reacted if he had been diagnosed at the screening - it's easy for her to say now that she loves her boy and wouldn't terminate, but in reality how do any of us know what she would have done!? For all we know she would have terminated and it would have never been made public.

    She made out the introduction of the NIPT would increase terminations for DS - in reality I don't agree. You have the right to CHOOSE whether to have screening, and if high risk you have the CHOICE to do an NIPT/CVS/Amnio. If you were planning on not terminating you would either opt out at any stage or be prepared for life with a DS child. Just because it's more accurate does not mean more people will terminate. If high risk returned for any of the 3 syndromes via NIPT then usually it still needs confirmation via amnio/cvs, therefore if it comes back low risk then you are increasing the safety of the pregnancy by not having a further invasive test.

    I felt she was rather insensitive making a lady who had terminated for DS to watch YouTube videos of DS children - I mean really, is that a fair and professional thing to do?! The lady would not have made the decision to terminate easily, it will have been very upsetting, seems extremely insensitive in my opinion.

    I think that in all honesty no-one has the right to influence ANYONES decision either way, and no-one has the right to judge if you decide to terminate - do I judge people who decide to keep a DSchild?!? Nope I do not, that's their choice and their life, absolutely nothing to do with me!! I feel Sally was blatantly trying to influence the public to not terminate in future for DS....but she is doing exactly the same thing as what she said the medical profession does - she said they pressure people to terminate (absolute crap in our experience)....she's just pressuring people to not terminate.

    Although I do acknowledge the importance of raising awareness of life with a DS child, and providing an insight into it all, I just wish she had either just made it about DS and shown every side to it, or made it far more balanced and educational regarding the testing. Whereas all she did was make a very biased diary and make out everyone who terminates is wrong for doing so as they are trying to eradicate DS.....hmmm
     

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