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Old Oct 12th, 2012, 17:02 PM   1
Amour
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Down Syndrome risk results


I've just got my 12 week down syndrome results back and there were 1 in 1500. Which was said to be low risk

I'm abit concerned, did some googling and seems a lot of people got 1 in 20,000 and around that figure. I'm not overweight, in my mid twenties. Should I be worried. What could have contributed else to my score?

Babies NT measurement was 1.60mm and was 12weeks 4 days.

What result did you all get (if you feel comfortable sharing).



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Old Oct 12th, 2012, 17:17 PM   2
Amour
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Got some worrying scores on the following results

bHCG 3.43 corr MoM
PAPP-A 0.86 corr MoM

NT was 0.98 corr MoM which I think is normal.

Pregnancy is starting to stress me out sigh



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Old Oct 12th, 2012, 17:33 PM   3
thefirstbaby
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NT? Is this the screening for Down syndrome. To make you feel better I just had mine at 13 weeks and it measured 1.90mm. The doctor old me anything below a 4 is not worrying.


I don't know what my ratio was. But I think yours is good. I think it depend on age... They usually adjust the number based on age sometimes... It's a factor. But to me anything over 10,000 wouldn't worry me. I think you are fine.



 
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Old Oct 12th, 2012, 17:34 PM   4
thefirstbaby
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Sorry I meant 1,000.

I dont think you should worry.



 
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Old Oct 12th, 2012, 17:39 PM   5
britgirl82
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Stop Googling

1:5000 is a 0.02% risk that your baby has DS. That means you have a 99.8% risk of having a baby without DS. Does that help calm you down a bit looking at it like that? If someone told you your chance of winning the lottery was 99.8% you'd be pretty happy right?

By the time you get into the thousands, the difference between results is negligible anyway (eg a 1:5000 risk is 0.02% and a 1:10,000 is a risk of 0.01% - sure, it's half the risk, but it's actually a tiny tiny change). Of course you could be that one in either scenario, but it's unlikely.

The reason you got a higher risk than others (although it's still tiny) is either due to your bloods (a bit higher/lower than theirs) or the nuchal measurement (a bit bigger) since the results are combined in some fancy formula. Assuming the baby is healthy, the former are just what's normal for you (see below - I have 'bad' bloods so mine suggest a problem even when there isn't one - that's just how I respond to pregnancy!) and the nuchal measurement depends a lot on the sonographer: someone else may well have measured differently (our NHS sonographer got 2.3mm for us, and then the private scan a week later got 1.9mm - go figure...) - just like the baby's size. It's negligible differences in the end.

Despite all this, your NT sounds perfect: just right for a healthy baby.

My results with my first baby at 28 were 1:3000, and then with this one (at 30) we initially got 1:90. The NHS were super keen for me to have an amnio and to discuss 'possible next steps' (ie termination) but we refused (and were quite offended by their pushiness): we had a risk of just over 1%, which was still tiny (plus we'd wouldn't abort just because our baby wasn't 100% healthy). We paid for a private scan however to help prepare us if our baby is disabled which looked at more factors than just bloods and nuchal and our risk went down to 1:3000 again (as mentioned, I have 'bad' blood which skews my risk factor when only it and the nuchal are taken into account).

Ultimately, however low your risk, there is no guarantee that your baby does not have DS unless you are willing to have an amnio. But then a) your risk of miscarriage with an amnio is arguably higher than your (personal) risk of having a DS baby (depends on the skill of the person doing the procedure) and b) would you terminate a DS baby? If not, you need to think about whether or not the amnio is worth it.

Pregnancy is a big step into the unknown - from the gender, to the appearance, to the health of the baby, as well as the changes to you, it's all unknown and can be really scary. But you need to learn to relax: DS isn't the only health problem your baby could have, and if you worried about every single possible problem you'd go crazy. Sometimes we can have too much knowledge.

Sorry for the essay - hope it's helped to calm you down a bit.



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Old Oct 12th, 2012, 17:45 PM   6
littlesteph
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mine didn't say just said low risk and never means no risk



 
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Old Oct 12th, 2012, 17:46 PM   7
britgirl82
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Oh and for anyone in the UK worried by test results, there's a fantastic charity out there with a helpline you can call to talk through results and choices - http://www.arc-uk.org/



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Old Oct 12th, 2012, 17:58 PM   8
Amour
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Everyone thank you for reassurance. I very much appreciate it. This forum is like having a network of pregnant friends that you can share with, without fear of being made to feel stupid or being judged. Thanks!!! :-)


Quote:
Originally Posted by britgirl82 View Post
Stop Googling

1:5000 is a 0.02% risk that your baby has DS. That means you have a 99.8% risk of having a baby without DS. Does that help calm you down a bit looking at it like that? If someone told you your chance of winning the lottery was 99.8% you'd be pretty happy right?

By the time you get into the thousands, the difference between results is negligible anyway (eg a 1:5000 risk is 0.02% and a 1:10,000 is a risk of 0.01% - sure, it's half the risk, but it's actually a tiny tiny change). Of course you could be that one in either scenario, but it's unlikely.

The reason you got a higher risk than others (although it's still tiny) is either due to your bloods (a bit higher/lower than theirs) or the nuchal measurement (a bit bigger) since the results are combined in some fancy formula. Assuming the baby is healthy, the former are just what's normal for you (see below - I have 'bad' bloods so mine suggest a problem even when there isn't one - that's just how I respond to pregnancy!) and the nuchal measurement depends a lot on the sonographer: someone else may well have measured differently (our NHS sonographer got 2.3mm for us, and then the private scan a week later got 1.9mm - go figure...) - just like the baby's size. It's negligible differences in the end.

Despite all this, your NT sounds perfect: just right for a healthy baby.

My results with my first baby at 28 were 1:3000, and then with this one (at 30) we initially got 1:90. The NHS were super keen for me to have an amnio and to discuss 'possible next steps' (ie termination) but we refused (and were quite offended by their pushiness): we had a risk of just over 1%, which was still tiny (plus we'd wouldn't abort just because our baby wasn't 100% healthy). We paid for a private scan however to help prepare us if our baby is disabled which looked at more factors than just bloods and nuchal and our risk went down to 1:3000 again (as mentioned, I have 'bad' blood which skews my risk factor when only it and the nuchal are taken into account).

Ultimately, however low your risk, there is no guarantee that your baby does not have DS unless you are willing to have an amnio. But then a) your risk of miscarriage with an amnio is arguably higher than your (personal) risk of having a DS baby (depends on the skill of the person doing the procedure) and b) would you terminate a DS baby? If not, you need to think about whether or not the amnio is worth it.

Pregnancy is a big step into the unknown - from the gender, to the appearance, to the health of the baby, as well as the changes to you, it's all unknown and can be really scary. But you need to learn to relax: DS isn't the only health problem your baby could have, and if you worried about every single possible problem you'd go crazy. Sometimes we can have too much knowledge.

Sorry for the essay - hope it's helped to calm you down a bit.
Britgirl - thank you so much! Your 'essay' definately calmed me down. Especially when you did the maths; I didn't look at it like that at all. And I will try and take your advise with stopping googling, sometimes ignorance is bliss, I'm just a researcher (albeit not a very good one) at nature.

Thanks everyone, I can finally go to sleep now :-) xxx



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Old Oct 12th, 2012, 19:25 PM   9
starzz
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hi

i totally know how you feel.
i got my results last week, 1/1800
i was also googling others results (bad idea....google can be evil) and comparing with others i know (who all had 1/10,000's or better)

My Dr. told me that i was low risk and not to worry; all i do is worry!
she explained that all of my bloods and nt measurement could be normal/average and those with extreme low risk #s may all be on the low side of normal for all of their test results

i also converted my risk to a decimal and it made me feel much better



 
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