I had my 12 week scan yesterday and I was very anxious about my screening results and unfortunately I got put into the high risk category for Down syndrome with a 1 in 57 chance, where the national average for my age is 1 in 245.
Everything looked normal on the ultrasound, heartbeat was strong, all the organs they test for at that stage were visible and my Nuchal Translucency was 2.10mm which I was told was within normal range with the crown to rump measuring at 59.6mm which is normal for my stage.
They seem to think what is throwing it out is my hGC and PAPP-A results. They say they are in normal range, but there is quite a difference within the figures which are:
63.400 IU/I which is equiv to 1.5252 MoM
0.621 IU/I which is equiv to 0.4155 MoM
I have had OHSS as a result of the IVF stims and pregnancy so they said it could be because of that, but when they are telling you that you baby has a 1 in 57 chance of having downs, that’s all you can think about! Plus I haven’t had any stims since about the 22nd Feb, so unsure to how that could still be effecting it??
Has anyone else had this situation ? I am worrying beyond belief waiting for further results which take up to 2 weeks from an NIPT test.
Thanks in advance ❤️
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Sukibubs
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Hey Sukibubs. The NHS test slightly annoy me as they unnecessarily worry women about their baby having downs. My friend recently had a 1in25 chance and then she had the harmony test done privately and it came back 1 in every 10,000. My mum's chance was 1in7 with my sister and she hasn't got downs either. Have u had a harmony test done? I'd really recommend it. It is a bit expensive though. Good luck. I'm sure everything will be just fine. Xxx
I was so anxious leading up to the scan and screening that to he beard ‘you are high risk’ nearly finished me off, after trying for so many years.
So my trust offers the NIPT testing which I think is the same as the harmony one? I have had the blood tests done and now have to wait for the results which can take up to 2 weeks, which seems a lifetime to me.
They said that 1 in 57 equates to a 2% chance of having Down syndrome, which under normal circumstances seems low, but I can’t help but focus on the 2%.
They seemed to think that a lower PAPP-A rate could be down to the IVF because doc the stims, but I just don’t see how that can be still impacting things!
I really think you have nothing to worry about. That's a 98% chance you haven't got it. When u think about it.......that's not really a concern is it???Honestly, you'll be fine. obviously, wait for your bloods but forget about it for now if u can ( I know it's hard). Just concentrate on nurturing that little Baba inside u. Xxx
Okay, I was just reading up on the subject. Interestingly I was just flicking through some sites and believe what you will from a ‘Private’ site they were suggesting the NHS test in a slightly different way and were suggesting that the tests were not overly accurate, unlike private ones who test for the fetus DNA. I can’t remember the percentages of accuracy.
I’m currently 10 weeks + 5 and dreading the result of this test. I’m 41 but I’ve got a donor egg from my 30 yr old sister.
So this was just the standard NHS screening which hasn’t tested any DNA, it’s just stats put into a computer and generated the risk based on that and it’s my age and bloods skewing things, but the midwife did say that IVF can skew the bloods and I was reading that PAPP-A can be lower in IVF patients.
If it was again I would 100% get a private test at the earliest you could which i think is 10 weeks instead of relying on the first NHS screening.
I am sure you will be fine, they will take into account egg donor for you as they asked me if they were my own, so my age has also pushed up my risk.
I had this with my first pregnancy and I was terrified for 2 weeks waiting for the hormony results but they came back 1 in 10,000 & she is now a very healthy active 3 year old 😃
So glad to hear this, I am just terrified that after an IVF journey we lose it at this stage when I’ve wanted it so bad for so long! Just hope the NIPT tests come back with a reassuring rate like your 1 in 10,000
This whole journey is just waiting, waiting waiting. Even after a BFP it’s still new versions of waiting. I hope the wait for your results doesn’t drag to much x
Hi Olla85 thankfully it all came back fine good, I have a 1 in 100,000 chance of all three trisomies, but I’ll never forget how worrying that week was! I am now anxiously waiting for my 20 week scan next week and just pray to good that the little fella is developing as should be! I think the extra nervousness I have is because my sister-in-law devastatingly had to terminate her pregnancy at 21 weeks because the organs weren’t developing and she didn’t have enough amniotic fluid surrounding the baby and all I have is that in my head! Just one worry after another isn’t it!
Ah this is so comforting and so glad for younand the baby!
We are now in the same position - waiting for NIPT result and hearing that for other people it didn't happen is a great comfort!
I am so sad for your sister. It must have been a tragedy. However I am still so greatfull that we can undergo all the tests even if they are not always giving the outcome we want as I believe it is better than not knowing and finding out the horrible news at birth...
Oh I am sorry to hear this, what were the chances you were given? And what was it that pushed you up to higher risk?
I feel so sad that you are having to go through this worry too.
I remember the doctors saying it was such a small chance and that really didn’t register with me at the time, but if you can try and flip it round to think of that, I know it’s so tough though! I really hope you get the results soon, mine ended up coming back within the 6 days, I have everything crossed for you 🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼
Re my sister-in-law, it was terrible, but they have just had a beautiful baby boy last month, so they have had their rainbow baby now. Xx
Hi sukibubsCongrats on your pregnancy. I am in a similar position at the moment. I had a letter to say my papp a is 0.41 mom. Is that the same as yours? I am not sure what the cut off is for high or low risk as I am not seeing my midwife until 5th July.
I have also paid for the harmony test, which i am having on 5th July, as I think the low papp a has affected my screening results. I am a little nervous about it all. How do you get your harmony results? Hope you don't mind me jumping on your post x
My PAPP-A was 0.4155 of MoM and because of the difference between that and my hCG it pushed up my risk into the high risk category.
I actually got offered the NIPT test (which is the NHS version of the harmony test because I was high risk for free, so did that instead and had my blood test straight away and then got the results through the hospital 6 days later.
I did say at the time could I do it privately and get the results quicker, but they said that for the private ones the blood often gets sent to Germany or the states so actually takes longer to come back, so I just did the NHS one. My results came back less than 1 in 100,000 for all three.
Also with IVF women were typically seen with lower PAPP-A which is what I tried to cling onto whilst waiting for my results!
If you have anymore questions let me know as I relied a lot on these forums to get me through the days up to the results xxx
Thank you so much sukibubs.I am really pleased everything is going well for you.
I am a little confused with it all. My screening is actually low risk at 1 in 424 for downs and 1 in 962 for trisomy 21 so nhs won't offer further testing. It's really for my own peace of mind. I'm 37, ivf and can only assume it is my papp a that has brought the results down a little. I have no idea what my hcg levels are.
I am currently taking 150mg of aspirin every evening and my letter says I will get extra scans at 32, 36 and 39 weeks. What happens between 20 weeks and 32 weeks as that seems a long time. I am also having a planned c section this time at 39 weeks so would rather that scan be at 28 weeks.
This is great news for your sister. She is so brave to go for another pregnancy, I am not sure I could do it again having had her experience. She is such a strong lady!
My due date is 18th November, still don’t think I look pregnant yet, haven’t really got a bump! Because of my lower PAPP-A (which skewed my bloods for the screening), they are giving me extra growth scans, got like 1 a month until 22nd November!
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