View Full Version : Help with results from Nuchal Fold scan...
Hi Ladies and Gents
Hoping someone can give me some advice, words of wisdom, benefit of their experience.
We had our Nuchal Fold scan today for our third baby and have been told that we are considered high risk for Down Syndrome with this baby. Apparently the scan was okay, (I think as the Dr didn't mention the scan at all), but my blood test results were what put us in the high risk category. The chances ar 1 in 117, and we have been given the options of having a CVS, (which I have pretty much ruled out as the risk of miscarriage from that is higher then the 1 in 117), or an amnio from 16 weeks.
Has anyone been told they were high risk at this scan? Do you know if it was the scan or the bloods? Did anyone have an amnio?
I spoke with my OB on the phone afterwards and she pointed out that this is still only an under 1% chance that this baby MIGHT have Down Syndrome, and that she does get angry at the way they word things when giving these scan results. We have an appt with her in a couple of weeks to discuss things further, but I was hoping some people might be able to let me know what happened in their experience....
Hi:wave:
I think with the NT test what is more important is that nuchal fold measurement. Although, I have to say, this test is VERY inaccurate. Lots of people get high risks and everything is 'normal'
What you now have to weigh up is what you would do if faced with a +ve result after an amnio. If you would do nothing then what is the point of having an amnio? It only places more strain on the pregnancy and puts it at more risk of miscarriage.
If you want to know more and Down syndrome, feel free to pm me.:hugs:
Bambibambino
21-04-2009, 14:02
I'm sorry to hear you were given this news :(
I don't have any personal experience with this but I have regularly seen similar threads come up in this section.
If you do a search I'm sure you could find some of these and have a look at the outcomes of amnios and CVS. I have seen plenty of positive stories :hugs:
Hi sueliz,
Firstly I just want to say how sorry i am that your results have come back in the "high risk" category. This must be a hard time for you!
I too was considered high risk at my 12 week scan (pregnant with our third child) 1:15. I was devastated and like you our scan was fine, measurement of the nuchal fold was within the "normal" range but it was my bloods that pushed me into the high risk category.
We went to the hospital for a CVS however my placenta was in the wrong position for the Specialist to carry this out. We were advised to wait until a bit later for an Amnio.
Like Lunar said, if you would consider a termination if the results were positive then go forward with further testing BUT if you are happy to move forward regardless don't put yourself through it.
I wish you all the best!!
My result came in at 1/37 for DS. I was told by both OB's (I had changed OB's) that I should have the amnio. CVS was never suggested due to the higher miscarriage risk (twice that of an amnio).
I had the amnio & it really was not at all traumatic. I didn't feel a thing. The lead up to it was hard.... wondering if bub had DS.... and then waiting for the result was like torture. If you do go for an amnio I recommend you pay the extra couple of hundred (not claimable) for the FISH tests which give you a result in 24 hours.
My risk factor was high due to my age (41 at that time) plus the nuchal measurement was also high.
The thing with a NT result it's not a diagnostic test - it just gives you a risk factor. So 116 out of 117 women with exactly the same results as you will have a baby that does not have DS but 1 of those 117 will not. That's what makes it hard.... you have no way of knowing if you are going to be that 1 unless you have further testing. This is one of the reasons I believe that I don't believe anyone should get the NT test done unless they are prepared to have further testing.... or else the rest of the pregnancy is likely to be stressful.
I guess what you have to think about now is can you go through the rest of the pregnancy not knowing one way or the other? If the answer is no then you need to have further testing or you will go insane with worry. If the answer is that you can go through with the pregnancy either way & you won't stress too much about it then don't have further testing.
Don't leave your decision too long as not many OB's do amnios & it can be hard to get a booking & timing is everything with an amnio.
Best of luck with it all.
Thanks Ladies for your words and avice. We have decided for now to not have any further testing. To us, the chance of this bub having DS is too small to risk the chance of having a miscarriage as a result of the amnio. My DH and I also had a big chat about it all and we were both in agreeance that even if the result came back positive, we would not terminate so there doesn't actually seem much point to exposing ourselves to the risks involved in having the test.
Thank you all for your advice again - and especially thank you to Lunar. I had actually been hoping Lunar that you would respond and both your post and your PM were very helpful. Not only that, but I have read so much in the past what you have written and I have found your stories to be beautiful and inspirational. I do hope you know that you do make a difference.
Thank you all for your advice again - and especially thank you to Lunar. I had actually been hoping Lunar that you would respond and both your post and your PM were very helpful. Not only that, but I have read so much in the past what you have written and I have found your stories to be beautiful and inspirational. I do hope you know that you do make a difference.
naaaw:D
I'm so touched!:o
I am glad that I could be of some help.
Please know that I am here if you have ANY questions, or if you just want to chat.
:hugs::hugs::hugs:
xo
hi luv
i know you have decided now not to have an amnio and totaly behind you on your decision thought i'd let you in on my experience over the last week:
i had the same problem just one week ago!!!! my results came back 1:257!! which is apparently outside the cut off mark but i was still at an increased risk! so devestated not because of a risk of downs but just had been a miracle up to now and so many other things!! so my husband and i had the long discussion about downs and an amnio but i was still undecided deep down inside and couldn't make the decision so my husband did as he and i agreed on not putting the baby at an added risk! best choice EVER!!! as i researched futher into these tests i saw that a second trimester screen could be done!!! so i asked my OB!
so we did it and with added detail like no doner eggs (as we did ivf) with my weight added to the equation and a whole heap of other stuff my results came back today as 1:7000 thats right now 7 times greater than the average for my age!!!! everyones circumstances are different and there is no saying this may happen for someone who hasn't done ivf or some other reason that made my huge jump but if you are still quietly undecided there are other options that dont affect the baby like an amnio can... it just being jabbed by one more needle!!!!! anyway thought you might like to hear this!!!
good luck Kribby
Wow Kribby!! Thanks for sharing your experience!
Congratulations on both your pregnancy and the new, wonderfully low, low, low risk results. You and your DH must be over the moon!
we are!!!! :cloud9: we feel like all the stress is gone now... well not completely but thats what you get when you sign up as a parent is it not? lol
i'm just not sure how far you can really read into the nt tests!!!! and as everyone kept telling me if the NF was fin then the baby was probably fine as thats all they used to go on!!! when they mixed it in with a blood test i bet the people getting increased rick factors increased!!! and not because of people increasing risk with DS but and increased invasion of privacy :) lol
as my mother said... sometimes they can just go one step too far and think they know too much!
anyway i hope it gave you a clearer mind about your decision as we wern't gonna do an amnio either!! and from stories i have read on here about the same situations... put it this way i could only find one that had a "bad" ending (if you could call it that i wouldn't i would just say it's a different ending as to what was expected :) and it was only because the lady stopped writing in so it's not even a definite) out of all the threads on here!!!! :)
lots of luck Kribby:hugs:
Hi,
Just letting you know that I have had 2 high risk results(DS3 was 1:85 and DS4 was 1:5). I opted to have an amnio with both and I have two happy, healthy boys :)
Briswegian
01-05-2009, 17:00
I got an unwanted 2nd trimester blood screen and my risk came up high....I can't even tell you what it was now, 1 in 200 ish or something like that. Anyway, I was livid as I never ordered the test. I had a very unhappy week and now I have 11 weeks to go and can honestly say that I have mostly forgotten all about it. I had a scan at the hospital which looks for "soft signs" if you get all of them then you can prepare yourself for the possibility of DS. We got none. Still not out of the clear as not accurate either but helped me to calm my nerves and as I said, I can't even remember the risk now. Will let you know outcome when bubs is born!
Good luck.:hugs:
Hi Susan,
Just wanted to let you know my recent experience. I had 1:229 chance of DS due to my age (early 30s) and one of the elements from the blood test. Everything looked normal on the scan. They said there was a nasal bone and it all looked pretty good. We thought less than 0.5% chance of DS and we probably wouldn't have acted on a result.
However at the 18 week scan they could not find a nasal bone and said it might be hard to see or just small. The results for nasal bone still not very well defined and a bit controversial. Still no other indications of DS and was told would probably be OK. Had a very troubled weekend worrying and decided to have amnio. Was terrified but thought it would all be OK and would make rest of pregnancy easier. In the back of my mind I felt that we were gambling and not being honest about what a positive result would mean to us and our family. I didn't feel like I could really be honest with self until I had a result.
The fish result came back as positive for DS and totally devastated us. After much soul searching and heart ache we decided to terminate the pregnancy at 19 weeks. I can't even talk about how awful that was.
Just take a few hours to yourself and really get honest about what a positive result would really mean to you. If you decide to take the test do it early.
I wish you all the best of luck.
Hi Susan,
Just wanted to let you know my recent experience. I had 1:229 chance of DS due to my age (early 30s) and one of the elements from the blood test. Everything looked normal on the scan. They said there was a nasal bone and it all looked pretty good. We thought less than 0.5% chance of DS and we probably wouldn't have acted on a result.
However at the 18 week scan they could not find a nasal bone and said it might be hard to see or just small. The results for nasal bone still not very well defined and a bit controversial. Still no other indications of DS and was told would probably be OK. Had a very troubled weekend worrying and decided to have amnio. Was terrified but thought it would all be OK and would make rest of pregnancy easier. In the back of my mind I felt that we were gambling and not being honest about what a positive result would mean to us and our family. I didn't feel like I could really be honest with self until I had a result.
The fish result came back as positive for DS and totally devastated us. After much soul searching and heart ache we decided to terminate the pregnancy at 19 weeks. I can't even talk about how awful that was.
Just take a few hours to yourself and really get honest about what a positive result would really mean to you. If you decide to take the test do it early.
I wish you all the best of luck.
How very sad.:crying:
Sue, hope everything is going well for you.
You know where I am if you want to chat.
:hugs:
Hi Sueliz
Going through the same trauma as you at the moment. At my 12 week scan was told that the NT was 3mm even though the blood tests came back normal, the thing that has me worried:confused: is the baby came back with a heart concern which could be related to downs. They had given me a risk of 1/157 because of my age being 40. I am booked in for another ultrasound in 10 days and have decided to have an amnio. This is my third baby the two are healthy. I will keep in contact and let you know how everything turns out, and I wish you all the best. :hugs:
Hi Susan,
Just wanted to let you know my recent experience. I had 1:229 chance of DS due to my age (early 30s) and one of the elements from the blood test. Everything looked normal on the scan. They said there was a nasal bone and it all looked pretty good. We thought less than 0.5% chance of DS and we probably wouldn't have acted on a result.
However at the 18 week scan they could not find a nasal bone and said it might be hard to see or just small. The results for nasal bone still not very well defined and a bit controversial. Still no other indications of DS and was told would probably be OK. Had a very troubled weekend worrying and decided to have amnio. Was terrified but thought it would all be OK and would make rest of pregnancy easier. In the back of my mind I felt that we were gambling and not being honest about what a positive result would mean to us and our family. I didn't feel like I could really be honest with self until I had a result.
The fish result came back as positive for DS and totally devastated us. After much soul searching and heart ache we decided to terminate the pregnancy at 19 weeks. I can't even talk about how awful that was.
Just take a few hours to yourself and really get honest about what a positive result would really mean to you. If you decide to take the test do it early.
I wish you all the best of luck.
How very awful for you. I am so sorry you went through that. I imagine that your story would not have been very easy to share at all. Thank you for sharing it with me, and for your honesty. Many hugs to you and your family and thank you so much for your kind thoughts. :hugs:
I got an unwanted 2nd trimester blood screen and my risk came up high....I can't even tell you what it was now, 1 in 200 ish or something like that. Anyway, I was livid as I never ordered the test. I had a very unhappy week and now I have 11 weeks to go and can honestly say that I have mostly forgotten all about it. I had a scan at the hospital which looks for "soft signs" if you get all of them then you can prepare yourself for the possibility of DS. We got none. Still not out of the clear as not accurate either but helped me to calm my nerves and as I said, I can't even remember the risk now. Will let you know outcome when bubs is born!
Good luck.:hugs:
Good luck to you too - I look forward to hearing the news on the arrial of your bubs!
Hi Sueliz
Going through the same trauma as you at the moment. At my 12 week scan was told that the NT was 3mm even though the blood tests came back normal, the thing that has me worried:confused: is the baby came back with a heart concern which could be related to downs. They had given me a risk of 1/157 because of my age being 40. I am booked in for another ultrasound in 10 days and have decided to have an amnio. This is my third baby the two are healthy. I will keep in contact and let you know how everything turns out, and I wish you all the best. :hugs:
Thank you Mummy40. Best of luck with your scan and amnio and thank you for offering to keep me posted - I would very much like that.
Hi Again Ladies
So we had our scan on Tuesday and I am relieved and thinkful to say all looks good. There were no soft markers and eerything looked good. Obviously, our risk foor DS remains the same, but has not increased. We luckily remain happy with our decision to not have an amnio and are very grateful that bubba (boy number 3!!) looks to be of good health.
Mummy40 - I read about your results from your scan with your bubba's heart. I hope you get some reassuring and positivie answers soon - my thoughts are with you for hearing some good news soon.
Thank you to all who shared their stories with me - I founfd your honesty and experiences to be very valuable.
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