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Increased risk of downs NIPT or cvs

38 replies

taraRoo · 23/10/2020 11:58

Hi everyone

I have no idea what to do here. I'm in shock. My bloods came back after 12 week scan and put me in higher risk area for downs. 1:97 to be precise. I'm terrified.

The Nuchal fold was fine but my blood hormone level was very high,

I have a choice of nict or cvs next week. Nict will cost £350. Luckily I'm in a position to pay this. I have opted for this but I'm not sure whether I'd actually rather just have to cvs for a yes or no.

What do you think?

OP posts:
TaraRhu · 12/11/2020 23:20

@weivfgotthis that's good news! 1 in 10000 is very low but I can totally understand why you might still do the amino. ILet us know what you decide and how it goes.

How are you getting along otherwise?

Bright81 · 13/11/2020 20:02

Hi everyone, I hope you don't mind me joining this thread. Just wanted to say how much your posts have helped me and I'm so glad you all had good news!
I'm currently waiting for my NIPT results as I received a 1/86 risk from the combined test. My NT was normal but I have a low PAPP-A and high HCG. I saw the consultant yesterday who did a further scan and told me that the nasal bone was there, the heart and liver were functioning normal and still a good NT reading. This has made me feel slightly better but I keep having bad moments of anxiety and just think of the worst happening.

This is my first pregnancy and I feel like I was so naive to all these risks before Confused

Twinsat42 · 13/11/2020 21:15

Hi @Bright81 all those results sound promising. Try not to let it get to you too much it really can eat away at you. Take care of yourself! When are your results due? Try to keep yourself busy! All I can say, get fresh air and do nice things. I had to have 3 draws to get result so I know how much the time kills when you’re waiting. Thinking of you and ask any questions I spent hours researching!
Do you have your actual results for hcg and PappA? xx

Twinsat42 · 13/11/2020 21:15

@Bright81 also how old are you? xx

TaraRhu · 13/11/2020 22:02

@Bright81 welcome your odds aren't that far off mine. I was 1:97. I freaked out for couple of days after the combined test. This is my second pregnancy and I had very very low odds with my first (even though I was 35 the ) so it never crossed my mind that the test would throw up anything. I was also very sick in this pregnancy and was feeling particularly nauseous and tired the day I had the test. Again this nausea was very different from my first and I just convinced myself that something was wrong.

What helped was researching the odds for downs and realising that at my age 1:100 is normal. This nipt test was therefore a bonus at 1:97 as usually they wouldn't even bother testing. So I had some additional certainty that all was ok.
But I won't lie it was hard. My odds were pretty good so I can't imagine how hard it was for others on here.

I got the results very quickly. I had the test on Monday morning and the results were back by 4.30pm on Thursday.

I have my fingers crossed for you. There's lots of support on here whatever happens x

Bright81 · 14/11/2020 08:26

Thanks @Twinsat42. I'm 29 and my results were:
NT 1.6
hCG 2.7 mom
Papp-a 0.34 mom

The consultant didn't really say anything to me about the hormones, just explained that they are slightly off but there could be various reasons for this. Having done some reading it does seem like there really isn't much research on what causes low Papp-a. I have joined a Facebook support group and it is positive to read lots of stories on there of successful pregnancies with low Papp-a. I think it's the gap between the two hormones that seems to be causing my high risk. I have been trying to research whether a DS baby could have such a normal NT level because before I knew anything about bloods I thought it was heavily based on this reading. My mind is just all over the place. Thanks for your advice, I'm going to try and get some fresh air over the weekend as I feel all I've done this week is lay on my bed crying and glued to forums trying to read as much as I can!

@TaraRhu thank you for making me feel a little more positive! I know how I have felt with a 1:86 risk and so when I have seen people with higher risk my heart has broken for them. Thankfully I have seen so many clear results after this and when I read that I can almost feel the relief for them!

My two older sisters are both luckily having uneventful pregnancies, one with her second. So before my results came back they had no idea what Papp-a even was. Before reading on these forums I had clue so many women had this news given to them and went through hell like this. I think the worst thing was just receiving the call tell me I was high risk, not explaining any of it on the phone and then just saying what my options were. 90% of what I now know about it all has purely come from other ladies who have gone through it and shared their stories in the hope of helping other people, which I am so grateful for.

I think the midwife has said not to expect the results next week but the following Monday or Tuesday. So a long and anxious wait ahead. Keeping imagining the call coming with bad news and it makes me feel sick.

Thanks for all your help Daffodil

Iknowblackcatsarelucky · 14/11/2020 09:58

Hi @Bright81,

I am waiting for NIPT test results after having a 1/29 chance of Downs syndrome. It is a horrible situation to be in. Just crossing everything for a good result x

TaraRhu · 14/11/2020 11:16

@Bright81 yeah, it's a bit of an eye opener all of this. I had no idea what the dark side of pregnancy felt like. I'm now quite anxious about the 20 week scan as I am not quite as naïve as I was before.

My results came a lot quicker than they said they would so hopefully yours might come a bit faster too. Xx

TaraRhu · 14/11/2020 11:17

@Iknowblackcatsarelucky good luck to you. X

Bright81 · 14/11/2020 11:19

@TaraRhu yeah I think anyone going through this is probably going to be more anxious about each stage going forwards. I hope your 20 week scan goes well, fingers crossed for you x

Bright81 · 14/11/2020 11:20

@Iknowblackcatsarelucky sorry to hear you're going through it too. I hope your results come back soon and are good Thanks

Iknowblackcatsarelucky · 14/11/2020 21:54

I hope yours are good too @Bright81.

Thanks @taraRoo

Whaam · 30/07/2021 18:18

@Twinsat42, sorry to bump this up again, but I just wondered how you got on? I hope it's not insensitive to ask if the NIPT results were accurate?

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