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Old Sep 20th, 2011, 13:16 PM   1
Sarah27
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For those given 1:5 for DS screen


Hello ladies
Just thought I would share my story to give you some hope and help and support! It seems many of us are given high risk for DS atm! Makes me wonder what's going on?

I was given 1:5 chance of having a baby with DS at my scan based on my nuchal fold of 2.7mm (slightly higher than average but not technically "abnormal" according to my consultant) My blood work was the main thing that throw our risk into the very high end... My HCG was measured at 3, where as they like this figure to be 1... and High HCG with a relatively normal PAPP is a "marker for DS." Both my DH and I are 28 so not in the "older" catergory either.....

I tell you I googled and researched and didn't find much info on high hgc and what it meant... But was reassured that altho it was a marker for DS it could also be "just one of those things"

We were scheduled for a CVS twice and on both occasion they were unable to perform it due to where the placenta was..... We were offered the vaginal option but we were not happy with the mc risk as it was 3% at our local feotal medicine unit. On the second failed attempt the consultant looked at various other markers for DS... Nasal bone present, heart looked fine, brain looked fine, blood flow through the liver fine, feet and hands looked fine.

We opted to wait to have an amino at 16 weeks. This was done on Friday and tbh in my heart of hearts I was not expecting a good result...... We had a stillborn baby the year before and I thought baby bad luck was following us around!

We got our result today and it was negative for DS! Which is just fantastic and not something I was prepared for! LOL We also found out we are expecting a girl....

I thought it would be nice for me to share what happened as altho our odds were very high the only thing that got me through the past 6 weeks was reading others in a similiar situation.... Other mums who had been given such a high risk and every thing turning out to be okay! You all give me such faith at times especially when I was feeling so negative!

So if anyone you are given those odds please breathe deeply and try to be calm open each door as you get to it and take it one day at time......They just put you in risk catergory they don't actually tell you yes or no...
Unfortunatelty you can't change the outcome of the result through worry alone! And I did a hell of a lot of worrying!

Lots of love and healthy happy bumps and mums!



 
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Old Sep 20th, 2011, 14:28 PM   2
Caseys
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The same thing happened to me, 1:5 as a result of the blood work and I had an amnio at 16 weeks telling me my little boy is fine. Scary though huh?

You probably just got the results of the FISH test. I got my full results just over a week after my amnio and they came out normal too. I'm sure yours will as well. :-)

Thanks for sharing, I wish I had seen your post when I was going through the same thing and am glad we're both ok, "despite the odds".



 
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Old Sep 20th, 2011, 15:01 PM   3
beetroot
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Thank you for sharing your stories. I went for a "reassurance" scan at 10 weeks and the sonographer noticed the NT looked enlarged and measured 2.3mm. We were told there is no data for that gestation to compare so now we have to go back in a weeks time for a NT scan. If the measurement isn't good at that appointment, we're having the CVS then and there! I'm worried the NT will grow in proportion to the foetus, which will not be a good thing, plus I'm 41yrs old so age is not on my side!
Saying that, its ladies like you, that post your positive stories that are keeping me sane at the moment!
Good luck with the rest of your pregnancies and congrats on the great results xxx



 
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Old Sep 20th, 2011, 16:39 PM   4
mmmsrb
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my risk was 1:16 for down syndrome because my HCG levels were three times higher than normal ! but my risk was brought down to 1:32 after finding out everything was good with the fetus on the high resolution ultrasound i opted out of the amneo . 2 months to go !



 
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Old Sep 20th, 2011, 18:48 PM   5
libee17
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I was given a 1 in 5 chance also but that was based soley on the nuchal fold 4.4, they told me that i was already at the highest risk possible 1 in 5 and that they wouldnt even consider doing the bloods. Two days later i went in for a cvs, which they had to do vaginally, it wasnt so bad pain wise. I just gripped my fiances hand really hard, closed my eyes and took deep breaths. It just felt like an extended pap smear with one long cramp. I didnt get my results for almost a week and a half, but when they came we found out she was a girl (whoo0hoo) and that her chromosomes look great!

What i dont understand and still dont to THIS day is why the geneticist I saw directly after the nuchal reading told me that it was highly likely my baby would not be born "normal" and would most certainly have a defect of some kind. since when does a 1 in 5 (20%) turn into a high probability? Its more likely 80% that everything is ok! He even shook his head sadly when we asked if the chromosomes came back normal was there any chance for our baby to live a normal life!

I was much more optimistic after seeng my CVS doctor (which if you you have kaiser i would highly recomend doctor montgomery). He told me that we had a 20 % chance of a chromosome abnormality, and since her nasal bone was present he lowered the odds to 10 percent! Quite a difference!

we are still waaiting till she gets bigger (as a high nt is also indicative of birth defects/heart defects). I am about 17-18 weeks and will go in next week for my fetal anatomy scan and two weeks later for a fetal heart echocardiogram.

I would love to hear how everyones pregnancys went after these scans for them as well. Once the cvs or amnio have cleared your baby of chromosome abnormalities. and promise to update myself as well



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Old Sep 21st, 2011, 13:04 PM   6
Sarah27
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Thanks for sharing ladies I just hope others see this and see it can all be okay even when you are given such high odds! I mean for me with my erratic hgc and slightly higher than normal nuchal was probably what through me into the higher risk but I have no clue how they get 1:5! And you are soo right they should phrase it differently when then tell you!

Libee- Hope your nuchal sorts itself out.. I know a lady who at 20 weeks her nuchal fold was 7mm and she also got given a 1:5 risk then.. Her baby was fine and the fluid sorted itself out..

Casey - I was told if the first part came back ok the rest was highly likely to be clear as well..So I have my fingers crossed! The wait has been the worst ever tho! And the tears and stress!!

Beetroot- I would have said 2.3mm at 10weeks is still in the normal range.. Mine was 2.7at 11 weeks so abit higher than yours, but a week later....hope you are keeping sane!

MMMSRB- I think sometimes little girls make us produce more hgc! I know I didn't have these high levels when i was pg with either of my DS!

I really wish they would take everyone as an individual into account and not base everything on statistics and what it should be everyonen is different every baby is different... xxx



 
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Old Oct 6th, 2011, 11:41 AM   7
Sarah27
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Hi,
Just a quick update - My full screening of the karotype from our amino has come back clear today...
Also have had anomaly scan and nuchal was measuring 1mm ! x



 
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Old Oct 7th, 2011, 14:58 PM   8
beetroot
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Brilliant news Sarah! Breathe easy and enjoy the rest of you pregnancy! xxx



 
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Old Oct 8th, 2011, 06:58 AM   9
Sarah27
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I will try! Now they are looking for the condition that made my last little one become an angel! Geez I will just be counting down the weeks till she is hear! PAL is hard! x



 
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Old Oct 10th, 2011, 14:14 PM   10
lottie77
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Hi ladies I dont mean to sound cheeky but all these stories about false positives grates on me, wether its 1:2 or 1:10 or 1:28 or 1:250 you have to remember that you or the person you knew were not that 1 but somebody's child was , My odds were 1:28 my baby was that 1 so there were another 27 women who were also given 1:28 whos babies did not have down syndrome and im sure they were going on about false positives and waste of stress etc but I wasn't because I was that 1 for who all the stress and worry became a reality for. These tests are done for a reason.



 
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