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Nutella
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Topic: Downs Syndrome Testing Posted: 03 September 2009 at 1:02pm |
Has anyone had the second trimester blood screen but NOT had the NT scan?
I had this and the results for the blood screen came back with increased risk of downs 1:150....so of course a bit upset and wondered if anyone else had been in this situation as well?
We are def not even going to consider aborting...it is just a bit upsetting when Dr says we need to discuss about whether to consider with pregnancy!
Anyone who has some lovely kind things to say to cheer me up please post!
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Lexidore
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Posted: 03 September 2009 at 1:20pm |
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Nutella
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Posted: 03 September 2009 at 1:28pm |
Thanks Bex....still 1:149 chance that baby won't have and if does...well still my little baby so will still be loved heaps.
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cuppatea
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Posted: 03 September 2009 at 1:35pm |
Did you have that anatomy scan at 20 weeks? Cos I think that they can normally tell from that if something is up as well, not always and not as accurate as the nuchal fold one (I think something to do with a heart condition that downs people often have as well, I'm sure someone will correct if I'm wrong).
And yep like you say 149 chances that all is well.
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CuriousG
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Posted: 03 September 2009 at 1:42pm |
I agree with Cuppatea - did you have the 20 week scan? Did they see a nasal bone, was the heart ok? I think you need to talk to your doctor about what those results were - whether or not any abnormality was seen then.
I haven't been in your *exact* situation but I did have a 1:55 chance with DD of Downs. I went ahead with the amnio and all that - she is fine.
I hope you get the answers you need very very soon.
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Nutella
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Posted: 03 September 2009 at 2:53pm |
Yes had 20 week anatomy scan and all was normal! The scan person certainly was not concerned about anything. But the Dr today was saying can't always tell from anatomy scan..so confusing!
I have decided to not think about it as we will love whatever baby comes along...and what is the point of worrying about it for the next however many weeks...
Do have midwife appointment next week and I expect it will be discussed then...not that anything will change our minds anyway.
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fire_engine
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Posted: 03 September 2009 at 3:02pm |
You may find your MW will look at it more positively. TBH,  at your doctor. To talk about whether or not you continue a pregnancy based on a 1:150 chance the baby may have DS -  .
I don't know how accurate the blood tests are - my understanding is that they are more indicative when done in combination with a scan. But that's just my impression from what I've read.
Trying to think of happy cheering up words ... only 116 days will you meet your wee baby
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Bobbie
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Posted: 03 September 2009 at 3:11pm |
Hmm if the anatomy scan was looking good then I would have expected that the chances of downs would decrease further than the bloods ratio alone once added in.
Surely it must be a pretty minute chance if it's not showing up in the anatomy scan? And if there is any Down's surely it must be a milder form not to show up?
Hugs - hope your MW gives you some more info when you see her. Sounds like you have a doom and gloom doc
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Paws
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Posted: 03 September 2009 at 4:39pm |
Yeah with an attitude like that I would ignore the doctor!! Surely he didn't mean it in the sense of continuing the pregnancy surely??? Ugh!!
I'm sure the midwife will give you better info to be honest and be able to put it in perspective.
Like you, we wouldn't even think about aborting...we will have the 12 week scan more just to look at the baby, the blood tests I have already declined and even if the scan showed a higher risk I would still decline further testing, makes no difference to us.
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luvmylittlies
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Posted: 03 September 2009 at 4:54pm |
I just wanted to add that I've worked a bit with kids and adults with Down's and they are absolutely delightful. But I agree with all the other posts - very insensitive approach from the Dr and 1:150 still seems quite high to me that you'll have a normal kid.
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girly_girl
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Posted: 03 September 2009 at 5:06pm |
Hi hun, the information I have says that if you have the blood test and the scan (NT) it still only gives an accuracy of around 70% - which leaves you with a margin of error of 30% and thats HUGE. Without having the NT scan I would say it is a LOT less than that!
I agree with the others - what an insensitive Dr!!
Big hugs and I hope things settle down for you soon.
xx
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Chickaboo
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Posted: 03 September 2009 at 8:34pm |
oh Nat  not sure if you can ask for another scan or if they do Amnio at 23 weeks plus... I would say if you are worried (which i am sure you will be) then ring your midwife asap and discuss options with her and see what the resullts were on scan.
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Nutella
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Posted: 03 September 2009 at 8:44pm |
Thanks everyone...feeling a lot better about it all...think it was more the Dr attitude because I can sure think of a lot of things worse than Downs...so glad you all think was insensitive.
To cheer me up I tried sewing some pocket nappies today ahha...not so good an effort!
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SammyA
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Posted: 05 September 2009 at 3:06pm |
Hi there
My youngest brother has Down syndrome and my mum was told she had a 1:1200 chance of having a child with Downs syndrome- so tbh the tests aren't accurate at all. This was the 20 wk amnio test that was conducted and there is a 1:10 chance of miscarriage as well. My dr has already put pressure on me to have it due to my family history but I really don't care whether my baby has DS or not as my brother goes to a normal school, has a reading age 2 years higher than his actual age and is one of the happiest, most lovely kids that I have ever met! Nat is totally right- there are worse things that DS out there!
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Chickaboo
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Posted: 05 September 2009 at 7:51pm |
hi sammyA - do you mean the 20 week scan not amnio as they do that at 16 weeks and its a yes or no answer not a odds calculation as it tests the amnio fluid which has babies dna/cromsones in it.
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SammyA
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Posted: 08 September 2009 at 5:25pm |
Hi Chickaboo
Mum was 39 when my brother was born and she took every test available to her, including the amnio fluid. I've just asked her and she said that the scans came back stating that the folds in the neck were fine and the amnio test was negative for Down syndrome. You can understand we had quite a shock when he was 3 days old and diagnosed! However, he is the most lovable, happy child I have ever met and TBH a baby with Down syndrome would not phase me whatsoever :)
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caitlynsmygirl
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Posted: 08 September 2009 at 7:49pm |
I don't know much about it, but i did read a lovely article a man wrote when their baby boy was diagnosed 2 days after he was born
The doctor came into the room and said he has Downs, then seeing the parents shocked , upset faces , he said to them
"this baby is still the same baby he was before i came into this room , all thats changed is his situation "
..something about that always stuck in my head
*hugs,* hope it works out for you
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Chickaboo
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Posted: 08 September 2009 at 8:01pm |
sammya - what ahuge shock ti would of been - guess nothing is fool proof aye!
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SammyA
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Posted: 09 September 2009 at 4:59pm |
caitlynsmygirl wrote:
The doctor came into the room and said he has Downs, then seeing the parents shocked , upset faces , he said to them
"this baby is still the same baby he was before i came into this room , all thats changed is his situation "
..something about that always stuck in my head
*hugs,* hope it works out for you |
That's lucky- mum was told these words "we're 99% sure that baby has Down syndrome. You will need to lower your expectations. Any questions". It was one of the biggest shocks we had because all the tests said he was negative and tbh we didn't really know what Down Syndrome was. Luckily he grew up in a normal class at a high decile school and in the top reading and maths groups for his syndicate. It's a good thing mum didn't lower her expectations.  . I'm sorry if I seem so 'pro Down syndrome', it's just that I've lived with a kid with Down syndrome and I know how loving and wonderful children with Down syndrome.
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SammyA
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Posted: 09 September 2009 at 5:02pm |
caitlynsmygirl wrote:
I don't know much about it, but i did read a lovely article a man wrote when their baby boy was diagnosed 2 days after he was born
The doctor came into the room and said he has Downs, then seeing the parents shocked , upset faces , he said to them
"this baby is still the same baby he was before i came into this room , all thats changed is his situation "
..something about that always stuck in my head
*hugs,* hope it works out for you |
edited- for some reason the rest of my post didn't show up  What I had written was that you must have had a lovely doctor, my mum got told to 'lower her expectations as the baby will never be normal'. My lovely little bro is in the top reading and maths groups in a normal class with other 8 year old kids. Yes, a baby with Down syndrome is a shock but at least you have a baby! One look in the TTC and IVF threads will make you feel very appreciative of being pregant. I'm sorry if I've come across as 'pro-Down syndrome' but before my brother was born I had no idea what it was only that it was a disability, and after seeing how amazing he is, it is really upsetting to hear of people thinking of terminating these absolutely loveable kids.
Edited by SammyA
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