Waiting for CVS results

[Chouxbun]

Is anyone else waiting for CVS results? Our baby has a raised NT of 4.7 and we had NIPT done privately which came back clear for the 3 trisomies. I'm finding it difficult not to think about the possible outcomes all the time.

We haven't told many people about the pregnancy yet because of the worry that something is wrong, but I'm feeling more and more pregnant as time goes on. Planning on telling my boss on Monday but will ask to WFH until we get the results as I just can't face colleagues congratulating me when they notice my bump.

After horrendous sickness in the first trimester and then the NT concerns this has been an extremely difficult pregnancy so far. Hoping to hear from anyone who has experienced similar or is going through the same right now for some hand holding.

Thanks💐

[BPop8]

Hi,

I’m so sorry that you are going through this. We are at the very start of this journey having had my 12 week screening done yesterday (at 13 weeks 3 days) and my NT was 4.6 although the first time it was measured it was over 5. We were offered a CVS and wanted some time to think about it but have now decided to go ahead. How soon was your CVS done? They don’t do it at the hospital we are under so will need to be referred to another for it. How was the procedure if you don’t mind me asking?

Like you I’m also finding it hard not to think of all possible outcomes and mostly the negatives. I have read some positive stories on here and it is reassuring that your NIPT came back clear so I really hope the CVS comes back clear too. It definitely sounds like a good idea to tell your boss and great that you should be able to work from home whilst you wait, waiting is the worst.

I’ve also had a crappy first trimester and feel like this is another hurdle being thrown at us. I really hope all tests come out clear and this becomes a bad memory for us, what a way to start the new year.

[Chouxbun]

Thanks for replying, and I'm so sorry you're going through this too. It feels very unfair. Really hope so for you too that this soon becomes a distant memory.

I posted on another thread earlier this evening about how the CVS was. We had it done 2 days after our dating scan. It wasn't too painful and the staff were so kind and gentle with us. Happy to share any more details about it if that helps:

https://www.mumsnet.com/talk/antenatal_tests_choices/4772502-has-anyone-had-cvs-test-results-before-2-weeks

How have you found talking about the pregnancy? I've reached out to a couple of friends with what's happening but there are lots of friends and family who don't even know we're pregnant which was hard especially at Christmas, as I feel and look pregnant.

Take care x

[BPop8]

Thank you so much for sharing, your experience is really reassuring. At first we were really unsure whether to have it done but we want to know everything that we can so know it is the right decision for us.

So we have told quite a few people already. My family at 8 weeks, wider family over Christmas which was a week after what was meant to be my 12 week scan but I was only 11 weeks at the time. My boss and a few people at work already know because I’m a radiographer and there are risks involved with radiation and certain situations I’ve been in where I haven’t been able to hide it. We also told a few close friends just after Christmas not knowing what was around the corner but I’ve updated them all (apart from work as I haven’t been back in yet) on what’s happening and it’s been really lovely to have their support. Do whatever you feel is best for you, but I would say it’s not worth stressing that people may find out, it may bring you some relief to say that you’re pregnant but going through a worrying time at the moment and people will absolutely respect that. It’s entirely up to you but I got myself so worked up early on trying to hide it from people at work that it wasn’t actually worth the stress it caused me. I’m grateful that I have support from family and close friends right now because we really need that. Is this your first pregnancy?

x

[Chouxbun]

I see what you mean about it being reassuring to share with friends, I have got myself a bit worried about it. I'm planning on telling my manager on Monday and will ask to WFH until we get the results.

We have a daughter who is 2, and she had extra fluid at 10 weeks which resolved by 12 weeks and we got a clear NIPT. Although this time the NT is persisting later so I'm not sure how much of a comfort her results are.

We had a private scan at 11 weeks just before Christmas with the plan that we would share the news over the holidays. That scan picked up a raised NT which prompted us to do the NIPT, and we held back telling more people. How about you, is this your first pregnancy?

[BPop8]

If you don’t feel comfortable telling friends then that’s totally understandable, it’s completely up to you but it may ease some of your worries about the pregnancy showing. Hopefully nothing will come of the raised NT for you this time and positive that your NIPT was clear.

It’s interesting that they told you the NT was raised at your 11 week scan as I was only told it was too early to check (NHS scan). In hindsight I did feel like something was a bit off at the time and looking back at the scan photos I do wonder whether the sonographer could see it was raised then but didn’t say anything to us.

Yes this is my first pregnancy, I have been anxious quite a lot so far anyway and have tended to sway towards being negative so having had this news just confirms fears that I had so it really sucks. We are just trying to keep occupied at the moment whilst we wait and do things that make us feel good.

[Chouxbun]

That sounds good keeping yourselves busy, we're doing the same and also having lots of tasty food and trying to distract with good TV shows. I'm sorry your first pregnancy is such an anxious time. I've heard that ARC are really kind and supportive with tests and results, they have a helpline which I'll probably call at some point:
https://www.arc-uk.org/

We're also holding back too much hope or excitement which I think is helping us prepare if things don't go well, but I guess you can never really know how you'll feel. We had a miscarriage and D&C before our daughter which was really hard at the time but we recovered so I know that things will be ok in the end no matter what 💐

Yes you're right about the 11 week thing, the sonographer works for the NHS too and said to us it's too early and in her notes it says this but that the nuchal was higher than she would expect at this stage.

I saw some friends today and it was really good to share with them and have their support. I hope you had a good weekend and some happy times x

[jmm499]

Hi @Chouxbun I’m so sorry for the worrying time you’re having :( I have been exactly where you are almost to the day but 4 years ago… Our youngest son had 4.7mm NT at an 11 week scan for the NIPT which was such a shock as we wanted to announce things before Christmas etc. It was such a worrying time. We got a low chance NIPT result on NYE and then were
scheduled for a CVS early in Jan but they couldn’t access my placenta for it. We decided having an amnio at 16 weeks instead. All was clear and the high NT had resolved by this point too. The fetal echo and 20 week scan were both clear too. Our boy arrived safe and well at full term! They never did find a reason for the high NT and we were told it was likely ‘one of those things’.

It was such a stressful pregnancy and I remember it all as if it was yesterday so my heart goes out to you. We had had two miscarriages beforehand too and it just felt cruel to have to deal with all the uncertainty. It was especially hard being in limbo over Christmas time… I really hope you get the best of news - do you know when you’re expecting to hear?

@BPop8 very sorry you’re going through it too :( Wishing you all the best for the CVS and hope you get positive news!

Hang in there, thinking of you both x

[Chouxbun]

Hi @jmm499

Thanks so much for sharing your experience. I'm so glad to hear that your little boy arrived safe and well. I'm back at work today and hoping these next few weeks go quickly. I should get a call this week with the initial results which confirm the NIPT, then 2-3 weeks for the full microarray x

[Obione1]

Similar situ - low NH and then we did the NIPT which has come back high for downs. Got my amnio on weds and I'm 23 weeks. So many terrifying emotions and thoughts happening right now

[Chouxbun]

Hi @Obione1, I'm sorry you're going through this. It's a scary time for sure. Good luck with your amnio tomorrow, let us know how it goes x

[Peaches1906]

Hello,

thank you all for sharing as you’ve made me feel less alone with this in my first pregnancy.

I had my first scan last Thursday at 12+3 and they found a ‘significantly’ abnormal nt result of 5.5. By Friday afternoon, they had already referred me to a specialist and I have a CVS booked in for tomorrow. I can only assume it’s moved so quickly because it’s such a high result.

I, too, have been terribly ill in the first trimester and told close family over Christmas about our pregnancy. Feeling extremely anxious and sad about the whole situation but very lucky to have such a good support system around me.

Holding out hope for us all.

[Chouxbun]

Hi @Peaches1906 , I'm sorry you're going through this too. Thanks for sharing, it is comforting to hear others are experiencing similar. The sickness is awful isn't it, hope it's eased off now. I was on anti sickness meds for a while but now just take one occasionally if I feel dodgy again.

I think the speed of booking the CVS is normal, I had mine 2 days after the dating scan. I assume it's because the results take so long they want to get the ball rolling. Good luck for tomorrow x

[BPop8]

Hi @Obione1 and @Peaches1906 I’m so sorry you’re also having to go through this hell, I wouldn’t wish it on anyone. I hope both of your amnios/CVS went ok today, I have mine on Monday which is 10 days after my initial scan which is awful to have to wait so long.

We had our full screening results yesterday (the combined test with NT and bloods) and my risk of Edwards and Pataus came out as 1 in 5, risk of Downs 1 in 108 and I’m devastated. I know there is a chance things could change after the amnio but I’m in that headspace of thinking nothing but the worst now. I took the day off work today to try and gather my thoughts as although it’s good to be busy, I couldn’t process anything yesterday. Wishing you all the absolute best outcome at this horrendous time.

@jmm499 thank you for sharing your positive story, I’m so pleased everything turned out well for you and your little boy and so sorry you had to go through all of this too.

@Chouxbun how are you doing? I’m sure you will be getting the first part of your results soon and all my fingers are crossed for you x

[jmm499]

hi all

goodness my heart really goes out to all of you, it was such an incredibly difficult time and the waiting was just agonising.

so sorry you are here too @Obione1 and @Peaches1906 😞

@BPop8 I had a similar chance result from the NHS screening but for T21 (ours was a greater than 1 in 4 chance) and it really did floor me. I don’t want to give false hope but please remember that you’ve only had screening tests up until this point… Keep taking care of yourself ❤️ Will be thinking of you on Monday x

hope you’re ok @Chouxbun

sending love and strength to all xxx

[Chouxbun]

@BPop8 I'm sorry your wait has been so long to get tested. All the uncertainty and worry is so hard, but like@jmm499 said the odds and NT measurements aren't a diagnosis.

I called up the unit just before they closed today and my results had come in 10 minutes earlier. The first part of the CVS is clear which backs up our NIPT result and also rules out a couple of sex chromosome disorders. That's CVS Thurs and results end of Weds the following week. The midwife suggested I call again at the end of next week to ask about the second part if they haven't called me first.

I have an extended family event on Saturday and half of them don't even know I'm expecting so I'm torn between sharing the situation or avoiding going!

[Peaches1906]

Thank you all for your encouraging words, I really do appreciate it. 

@BPop8 I’m very sorry your screening results weren’t what you had hoped for & I hope the time off has given you time to process your thoughts. It’s so difficult to think about anything else isn’t it. I know these words most likely won’t help how you feel, but when I had my screening results, the midwife said that they see 1 in 5 statistics often and it all works out ok. I hope they can get you booked in for your amnio soon so the unknown can be put to rest & answers will help us process further. 

Thank you so much for your positive story @jmm499 mm499 it really does help. And it’s so useful to have somebody who understands how we feel at the moment. You’re right it’s the uncertainty that’s the worst. 

Hope your amnio went well today @Obione1 ne1 My CVS was ok - uncomfortable & a bit sore & tender this evening but glad that’s it done. All we can do now is wait & hope. 

So pleased you were able to get your first set of results today @Chouxbun bun - it’s really great news. Are you able to feel relieved at all yet? With regards to the family event, go with your gut I’d say. If you’re like me it’s probably the ‘what ifs’ holding you back. But you deserve to share the happy news whenever you feel ready. Let us know what you decide to do :)

[jmm499]

Aww that’s good news @Chouxbun - I remember allowing myself a little relief each time we cleared a hurdle ❤️

I’m glad your CVS went ok today @Peaches1906 - take it really easy 🙏 Thinking of you 😘

Yes my screening midwife also told me of a lady with a 1 in 2 chance that was clear so you really never can tell… Plus I had a friend with a positive T21 result with a 1 in 130 screening outcome - I was convinced at 1 in 4 that I’d definitely have a positive result too. But it is still ‘just’ chance. I hoped my screening results would give me some hope and they definitely didn’t do that…! I think a high NT and age (I was 39) almost always gives that kind of result. My Papp-a was a bit low and HCG a bit high but it was def with NT and my age that influenced my chance…

Really thinking of you all - I hope you are managing to sleep. I would often wake at some ungodly hour and just google looking for hope 😩 It’s so hard, very sorry you’re all going through this xxx

[Obione1]

Hi Everyone,
Well done for your results & how are you feeling after your CVS?
Not great here, went in and they refused to do the amnio because I'm 23 weeks and the risk of miscarriage to both babies is too high, and I certainly don't want that.
I'm going to transfer my care for the rest of the pregnancy to Kings, London as they're going to scan me every 2 weeks going forward from now.
She said that it's rare that the NIPT test comes back wrong and that we should now mentally prepare for one baby, not the twins that we're currently pregnant with.
She's referred me to a counceller who specialises in this
Then, she'll do the amnio at 32 weeks, (which is in 8 weeks) because the risk then is premature birth, not miscarriage, which i understand and still, there is a glimmer of hope that he doesn't haven't downs, but I can't cling on to that for the foreseeable.
It's so incredibly hard.

[jmm499]

So sorry @Obione1 I can’t imagine what you’re going through right now :( So hard to have to wait so long too - I am sending you all my love ❤️ xxx

[Chouxbun]

@Obione1 I'm so sorry for what you're going through. I thought they couldn't do NIPT for twins, and that's such a long wait for you to have the amnio. Why has she said to prepare for one baby? Sending you virtual hugs and praying for a healthy outcome for your twins.

[Obione1]

@Chouxbun i suppose because he won't survive outside the womb or would have DS and I'm not sure we'd be able to care for him, if he did, as we'd have 2 babies at the same time.
The NIPt apparently, they can do but they can't say which one is more at risk- but at the NT at 12 weeks they can?!
Our NT results were ok - 1/1000 & 1/650 and on the scans, babies are good - good brains, good hearts. The only reason we had the NIPT is because T2s femur was showing below the 5th percentile, but yesterday, 2 weeks on - he's on the 9th, so he's growing.
My husband & I have decided that we just have to carry on, keep loving both babies, keep enjoying the pregnancy & feeling all the love. I'd be devastated to think that if one didn't make it, that we'd 'shunned' the pregnancy, they both deserve all the love and care and that's all we can do right now.

Has anyone had any results back?

[Chouxbun]

That sounds like a really good mindset to be in with your husband @Obione1 .

I had some dark red bleeding last night and was terrified it would escalate over night. It didn't and now I'm waiting to call the EPU to see if they'll check me over. Can't help worrying the CVS is to blame but it is a week since the procedure. I'm also sure I felt movements the last week or so and this morning I can't feel them anymore.

[Chouxbun]

Update on my bleeding, EPU scanned me and everything is ok. The placenta has moved closer to my cervix which could be why there was bleeding. Nothing to suggest the CVS caused any problems.

[BPop8]

@jmm499 thank you, I will definitely try to keep that in mind, sometimes it just feels "safer" to prepare for the worst outcome rather than clinging onto any hope that may be taken away but I know you're right, only the CVS/amnio can give us a diagnostic result.

@Chouxbun I'm so pleased that the first part of your results have come back clear, you must feel so relieved but I understand there is still a little way to go. So worrying that you had some bleeding but that makes perfect sense if your placenta is lying close to your cervix, not what you need right now but I'm glad baby is ok and there have been no problems relating to your CVS.

@Peaches1906 thank you, it really did help to have a day off to gather my thoughts and just cry really, it's hard putting on a brave face at work as I'm sure you all feel too. How are you feeling after your CVS?

@Obione1 I'm so sorry that you weren't able to have your amnio, it must be so scary to be so far along and facing this. It's really promising that twin 2 is still growing, your 12 week screening results were so low risk for both and everything aside from femur length at the time was really positive. I know you must just want answers right now and I really feel for you, all my fingers are crossed that you have two healthy babies.

I was trying to do some research to make sense of my screening results which proved really difficult. I did come across a great post on here where someone had explained everything if anyone is interested in finding out more: https://www.mumsnet.com/talk/antenatal_tests_choices/4939237-info-for-those-with-a-high-risk-screening-result

My results were:
PAPP-A 0.44 (Corr. MoM) - less than 0.4 is considered low so it's on the lower end
hCG 0.24 (Corr. MoM) - less than 0.5 is considered low so mine appears to be very low
Then combined with my NT measurement of 4.6mm and my age (33).
The post above states "In pregnancies with Edwards and Patau: PAPP-A and hCG tend to be low; NT tends to be raised." which correlates with my result being so high for E&P.

It is really difficult to keep any shred of positivity with such bleak results but I know there is a chance my baby is healthy, it felt like such a relief to get to 12 weeks to have it all taken away and replaced with worry. 2 more days until my amnio.

Thank you all so much for your ongoing advice, support and for sharing your stories, it has made such a difference to me to be able to talk to people who understand what I'm going through and whatever happens please know that I am here for you.

[BPop8]

How is everyone doing? X