I had my results from 13 weeks screening this morning. To be honest they are not looking great Risk of trisomy 21 is 1:67, I am 39 ( despite the fact that I had my embryos tested prior to the transfer). Nuchal Translucency is 1.8 which is normal. My MoM PAPP A also came back quite low at 0.36
I have done NIPT test this morning to investigate further.
If you have any bad or positive experiences with something similar and are happy to share please let me know as I am slowly losing my mind
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Nuszkahope
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Ask your lab that did PGS testing for your embryos, they definitely have an opinion on that just for your peace of mind. I am really sorry that you have to go through this. Usually labs are checking for trisomy 21 but ask them to make sure. Lots of hugs from me 🤗❤️
The embryo was definitely tested for trisomy 21, that’s why I am so shocked with the results. Also the nuchal translucency was good, baby measured well etc. I have done the NIPT test this morning as apparently it is more precise than what I had done last week. Just need to wait and see but with PAPP low as well I am definitely very worried 😔
I remember one lady posted few months ago the same question as you. The number came high risk because of her age (over 40). Try to not think about bad things, you know it is just a mathematic formula that calculates it. You can even find the formula on internet. You can ask your lab if they had cases where embryo was PGS tested and the baby had actually trisomy. They have statistics so for sure they will advise you. I am really sorry for you, I know you are worried but changes are incredibly slim to have this syndrome. I am sending all my positivity to you 🥰❣️
Thank you for you reply Georgia. To be honest I am more worried about my PAPP A coming back at 0.36. I have read somewhere that it can be lower with IVF fet pregnancies but not sure this is true? Do you have any knowledge of that?
It is a little low and can sometimes be related to smaller than average babies so serial growth scans are usually offered to track growth and fetal wellbeing
I see, thank you. My baby has been measuring well since 6 weeks so I was quite surprised to see this result. I guess now, at 13 weeks, it is still quite early in pregnancy to be able to tell how it will all progress further.
Hi, I had the same I am 41 and my odds for downs were 1:24! Have you heard of the harmony test? You should get this, it’s a simple blood test and not invasive. It will cost you though about £400 privately. My odds have come back as 1 in 10000. Those NHS combined tests cause unnecessary worry x
Thank you for your message. I had NIPT test done yesterday and now have a long wait for the results x I wish they would just offer this test to me immediately, I don’t mind paying as I am with a private clinic so had to pay for absolutely everything from start to finish … the cost of this test is just a drop in the ocean… unfortunately even if this odds of Down syndrome come back fine I still have low pappa to worry about
How is your pregnancy going? Hope everything is good x
I think my Papp A was 0.7. So still on the low side. I have read on other sites that IVF meds can mess up your blood results. If the Nuchal fold was under 3.5 and you had no other markers for T21 I would not worry too much. It is excruciating waiting for the NIPT results though! My pregnancy is going well and I am currently 15 weeks. I wish you all the best. Keep me posted on the results x
I had it done at Chelsea and Westminster hospital in London. You can ask for it at the Kensington Wing (private ward) I only had the blood test though. A lot of places in London offer the blood test and a scan but it cost a bit more x
Were you offered the NIPT on the NHS or did you arrange it privately? I am not sure how one goes about getting them as I would like one irrespective of NHS screening calculated risk. Xx
I actually live abroad at the moment so I am with a private clinic, I had a simple test done, same as NHS’s one, if I had to do it again I would not bother with that again and go straight to do NIPT test which I did yesterday. Waiting for the results of that now, it will be the longest 2 weeks of my life…
Hi Nuszkahope I had the same fright as you at the beginning of May. My NT was 2.1 which was in normal range but my PAPP-A results came back as 0.4155 of MOM, when they put all the results into the computer my risk went from 1:245 because of my age (37) to 1:57. I was beside myself worried and had read too that IVF sometimes gives lower PAPP-A. I had the NIPT test and it came back with a 1:100,000 chance for all three trisomy 21, 13 and 18.
I completely can relate to how you are feeling, hopefully your results won’t take too long to come back (mine came back in just under a week) and it can put your mind at rest.
Thank you very much. I am sick with worry, I was not prepared for this at all. I had my embryos screened and transferred a completely healthy one, or so I thought… also at the scan the doctor was happy, said everything looks perfect… my NT came back at 1.8 which is good but pappa is 0.36, my age is almost 40 so everything combined gave me a 1:67 chance of DS very worrying indeed. I just hope these results come back soon x hope your pregnancy is going well?x
Just try to think that it’s just a computer that has given you that risk and actually the risk is so low.
My sonographer also said that everything looked perfect and didn’t seem phased by This 1:57 chance I was given, looking back I should have taken some comfort from that but at the time I didn’t!
I really hope you get your results back soon as I know the wait is agonising.
I am 17 weeks right now, so just nervously waiting for my 20 week scan where I hope everything is ok 🤞🏼 I don’t think you can ever prepare for all the worry with pregnancy can you, especially when it’s IVF xx
Yes, IVF can be really hard for some of us. It took me a long time to get here and now it is one worry after another. I was being very cautious at the beginning of the pregnancy not to get too attached to the baby as so many things can go wrong. I had spotting for 4 weeks so I was preparing myself for the worst, but as the weeks went by and you see the baby growing you just can not help it … I am so in love with this little bean already so the thought that something can be wrong is very painful.
I wish you the best of luck for your next scan ☺️X
I know right, I still say ‘if’ we have a baby when talking about it as I am so worried I will jinx it! I didn’t tell my family I was pregs until 14 weeks either as I am so worried that something bad will happen! My husband gets annoyed with me sometimes, but it’s just the way I am wired really!
I am the same, I always say if we end up having this baby, always worried that I will jinx it I told my mum and mother in law at 12 weeks and now after getting my odds for DS, I am regretting it and think that I have jinxed it by saying something before I got the results…
I had low pap a with my son when I had tests done early on. This meant I got a load of extra scans even though it moved to normal really quickly. Fingers crossed for you xx
Hi , have no experience as such but i do know that the nuchal reading is a good sign, as more than 7 in 10 babies are normal for DS if below 3.5mm. On the papp-A blood result that is below normal and your hospital will advise you take aspirin as their is a slightly increased risk of placenta issues such as as smaller for gestational age and blood flow so speak with your midwife when you can about aspirin. Optimally need to start by 16 weeks and stop by 36 weeks to allow the blood clotting factor to return ready for the birth. Its highly likely there is no chromosome issues don't worry. Good idea to do NIPT test just to be sure though. Best wishes i had aspirin for my first pregnancy
I would think its ok as you wouldn't be offered the astrazeneca only the pfeizer / moderna which has so far shown a very good safety profile. I would confirm ok with your midwife and also the vaccinator when you go. I had my pfeizer jab last week i was 1 day shy of 16 weeks xx
The PGS testing only looks at placental cells abs not at “baby” cells and I have heard of PGS tested embryos subsequently being found to have a problem. That being said if the NT is only 1.8mm and there are no other visible markers ie baby measuring fine and nasal bone seen then the score you have been given is likely just down to your age x
Can't suggest anything about the Trisomy 21 but try not to worry too much about the low PAPP A. I found out that I had low PAPP A and it really freaked me out because of the extra risks associated when you look online but the hospital I'm at don't actually consider the risks that much greater. It's a relatively new test they do, only started in the last 3 years or so they said. Now almost 36 weeks, I have ended up with pre-eclampsia so just make sure you get things checked later in pregnancy if you have concerns. They'll give you extra growth scans which is very reassuring and you'll be really well monitored. Try to take it a day at a time. X
Thank you very much Rainbow and congratulations on your pregnancy! Glad to hear it is going well.
My husband says the same thing regarding the pappa result. He is very good with statistics so it helps, after reading information online he isn’t worried so I am a little bit more relaxed about it. Off course things can still go wrong as they can with any pregnancy. Regarding the Down syndrome, I am hoping that it is my low pappa and my age that is giving me the higher risk, my NT test came back 1.8 which is good.
I just need to get through the next two weeks waiting for my NIPT results…
Another excruciating wait then! I hope it's all ok for you, I would think if you had the PGS testing it's actually low chance and they're giving you worse case but I don't really know.
I found the info online very scary but for me it's just meant extra monitoring and checks which has been reassuring anyway after the stress of getting here. I know someone else with low PAPP A too that conceived naturally, they picked up reduced growth so they're inducing her sightly early. I'll be having a c-section at 37 weeks due to the pre-eclampsia. Fingers crossed for you that it all works out. I remember how scared I was for a while after the results so just try and relax and do things you enjoy. X
Thank you. That's the frustrating thing, I generally feel well but it's too dangerous for me to go home. Had a sudden BP spike at the weekend and felt really ill but no warning beforehand. I wasn't on aspirin, I had read that they can do that in some cases. Definitely ask your consultant about it.
Oh I see, so you are kept in the hospital under constant observation? That must be very difficult I am sorry xx
I would rather not take it either as it acts as a blood thinner, if you need an emergency intervention you might be in real trouble. I will try to avoid if I can but we will see. I need to take one step and a time and at the moment it is waiting for these NIPT results…
Yes, unfortunately. My midwife sent me in to be checked because of my BP last week and they haven't let me go home since. I'll be in until after the baby arrives now. It's reassuring having all the checks though, I know baby is still doing ok despite everything.
Keeping everything crossed for you. 🤞 I'm sure the NIPT will be fine given the embryo was tested already. The only thing you can do is one day at a time.
The time will fly by quickly and is great that you are under observation and have great care from the doctor.You will be home with the baby before you know it x
Wishing you quick and easy delivery 😘 All the best xxx
Hi NuszkahopeI’m sorry you’re going through this atm, I’ve been there and the worry is horrendous.
What I will say though is 1 in 67, whilst a higher risk than we’d hope, is still a REALLY low risk!! It’s a less than 2% chance of your baby having trisomy 21! If you look at it that way, hopefully it will calm those nerves, just a little bit.
Also, the NIPT results will probably be back in a week. They say two but both times I’ve had it they were back bang on 7 days after taking the blood.
It’s the longest wait in the world and there’s nothing anyone can say to help with it but the usual keeping busy & distracting yourself are, I found, the best options.
For what it’s worth mine came back as trisomy 21 BUT I was 1 in 8, my friends came back ALL FINE and she was 1 in 13. I’d say 1 in 67 is pretty good.
Sorry about your result, life is so hard at times.
I know that in my case it is less than 2% but I still decided to go for NIPT as it is more precise apparently. My embryo also did not have trisomy 21 when we tested prior to the transfer so I am hoping for the best x
You need to wait for the NIPT results because it sounds like the test you just did was the one that puts you in a high risk category based primarily on age. I'm 42 and I got prefect results with NIPt. I took it at 10 weeks because I was paranoid as hell. Especially since you had embryos tested, I'm sure you'll be fine. Try not to worry.
I wasn’t even thinking about testing as naively I thought I will not have any problems given that the embryo was tested and fine. I think they did the quick test where they take 2 hormones and your age and give you the risk.
I hope I will have the results early next week, I can not function normally at the moment I am sick with worry...
Yeah I think someone else complained about that test a while ago on here. It's not very good and automatically puts us older ladies into high risk category. My doctor doesn't even use it and just does the NIPT, otherwise she would be freaking out every pregnant patient over 40.
I wish I knew about NIPT before my 13 weeks scan, I would have gone for it straight away instead of wasting my time with the fast test... to be honest I was being a little bit naive, I was relaying on the fact that the embryo was healthy, it did not even cross my mind that I can still be at any risk. Well, I guess you live and learn ... should have results sometime next week, just need to wait and see... Btw your doctor sounds so nice, I am thinking of changing mine, she didn’t explain any of my results to me despite of the fact that I have asked her 3 times, I had to look online what bloody pappa is etc
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Risk of trisomy 21 is 1:67, I am 39 ( despite the fact that I had my embryos tested prior to the transfer). Nuchal Translucency is 1.8 which is normal. My MoM PAPP A also came back quite low at 0.36
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