After an anxious 12 weeks, we attended our scan today. We were told the baby has fluid at the back of the neck, much higher than they would like. We've been referred to have the diagnostic CVS procedure but this will not take place until next week on Wednesday. Our chances for chromosomal issues are high at 64%, we have 46% chance of miscarriage and 19% of structural problems like heart defects. Can anyone provide any supportive words about how to cope with this bleak picture and how to get through the next week? I'm feeling lost and heartbroken. This was my 3rd transfer but 4th IVF cycle, we also experienced an early miscarriage in 2020. Thanks.
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Skittles11
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Have you done the genetic screening? NIPT I think it's called? It can be done at 10 weeks. They tend to be more precise than scans. Hopefully everything will turn out ok.
I’m sorry I don’t have any advice - but just wanted to say I’m so sorry that you are in this situation it sounds really difficult and the waiting must just make it even harder. Sending lots of love xx
So sorry to hear your news. Did they take an NT measurement? They should offer the NIPT test if you are high risk, which is more accurate. Wishing you well for your scan next week and look after yourself x
I’m so sorry you are going through this - I haven’t personally gone through this but a friend did following an IVF transfer. Have you had the combined blood test done and have they given you a risk factor? Excess fluid alone doesn’t always means bad news? Do you know what the measurement was? Were there other visible markers they could see on the scan? With my friend there was visible issues seen on the scan aside from the fluid. You could get the NIPT done but honestly you won’t get the results quicker than next week when you have your next scan but she did push for an earlier appointment and rang every day for a cancellation and was able to get one sooner which helped with the anxiety of waiting x
That's really useful thank you. I would phone every day to check about cancellations but they've told me I need to be measuring at least 12 weeks and they don't do the procedures on Mondays and Tuesdays. Because of both of these things the earliest they can see me is Wednesday. They did not comment on any other visible issues on the scan itself x
Hi all. Thank you for your supportive replies. I made a mistake in my original post as I said I was having a diagnostic scan but I'm having the Chorionic villus sampling (CVS) where they take a sample of cells from the placenta. I'm bypassing the NIPT scan because the CVS one tests more chromosomes. I didn't have the bloods done because I'd then have to wait for the result before doing anything else, I think based on the measurement of 6.7mm they seem pretty convinced I'd end up being offered the CVS scan anyway. X
I know someone who had this who after all the extra tests and CVS nothing was found and they gave birth to a healthy boy last month. Ultrasound measurements aren’t alway 100% accurate. No advice on how to deal with the next few days but hoping for you things turn out ok 🤞
Thank you for sharing, your friend must have been so relieved to have these results after such a scare initially. I hope with all my heart that we have a similar experience though I am not too hopeful given the statistics we received. Thanks for replying xx
I had my 12 wk scan on the 22nd October and was told the NT measurement was high. Had the blood test done that day but I was told because I’m 39 that the overall risk for a chromosome problem or possibly a heart problem was high. I decided to book straight in for a CVS test and had it 3 days later. While waiting for the initial results my bloods came back with a 1:6 chance of Down’s. Luckily, the test ruled out Down’s, Edwards and Pataus, but I’m still waiting for the full microarray results. The waiting is the worst part. Thought I might hear a couple of days ago but still nothing. I’ve just been keeping everything crossed and really tried not to google too much as it makes me worry even more. The midwife told me that even though my risk was high, lots of women in my situation get the all clear from a CVS test and the high NT measurement resolves itself. I’m clinging on to this. Good luck with everything, I’ll be thinking of you xxx
Thank you for replying to me and going through your experience. To get news like this is earth shattering and its really difficult to just keep waiting for tests and then results. I'm so sorry to learn you had a similar experience at your 12 week scan but pleased you have been able to rule out certain chromosomal conditions based on the preliminary CVS results. We spoke to a midwife and a screening nurse and I didn't feel like there was much hope, they never said anything about it potentially resolving itself - my measurement was high, much higher than the cut off of 3.5mm, so maybe that's why. I truly hope you hear back soon with your full results. Can I ask, how was the CVS procedure? Also how have you occupied yourself since your scan and hearing this news? I only went in for the scan yesterday and am struggling to get through each hour x
To be honest I was a total mess for a few days. Could not stop crying and found it really hard to sleep at night. Luckily it coincided with half term (I’m a teacher) so I haven’t had to be in work. I have watched a lot of rubbish tv to just keep my mind occupied.I went for my CVS test at the Royal London and the clinic was running late. Was meant to be seen at 4pm but didn’t get seen till 7pm. I think the wait was the worst. When they were about to start I started having contractions due to anxiety and they had to wait a few mins for them to stop. They numbed my stomach, but because I have a retroverted uterus, they had to use quite a long needle and I did feel a few sharp pains, but it was over quite quickly. I had my eyes closed the entire time because I was worried that if I saw anything it would make me panic more. I would definitely recommend you do the same. I had a friend with me and told her she had to watch the screen closely to make sure they didn’t do anything wrong! I had total rest for the following 3 days as I was so worried about a miscarriage. I think the stress of it just made me feel exhausted too. Stick on a few films and stay on the sofa if you can.
After the initial results I have relaxed a little. But my heart goes crazy every time the phone rings.
I feel a mess myself, although I am not crying consistently I feel so lost and helpless. I just don't know what to do to occupy my mind. Waiting 3 hours for your procedure must have been a horrible wait. I phoned the hospital today and begged them for an earlier appointment than next Wednesday, they have re-arranged it for tomorrow now. I also have a retroverted uterus so imagine the scenario may be similar. I will not be looking at the screen either, that will be too difficult for me. I have been given huge odds of miscarriage with the situation so felt the 1% odds of miscarriage with the CVS was nothing in comparison. Do you know when you expect to hear back with your second set of results? Xx
I got my results back yesterday and thankfully it’s all positive news. Just need to wait for the scan in 2 weeks now to check the heart.
Sorry to hear the CVS couldn’t go ahead, but I’ve heard the NIPT results are pretty accurate. It must have been a really stressful day. Fingers crossed you get the results quickly xxx
Just wanted to say I’m sorry the scan wasn’t what you expected. It’s so unfair. Sending you a big hug at this difficult time 💕
Hi there, just wanted to offer you my own experience, maybe it could bring you some hope or at least comfort in this challenging period. I also was given a very high NT reading at my 12 week scan, and had the combined blood test done, came back with an immediate referral to the FMU in London, where I had the CVS done, I felt the same as you, my pregnancy at the time was a miracle conception after a miscarriage and 2 years of unexplained infertility, we were just about to start IVF and I found out I was pregnant naturally (still don’t know how that happened!) but I was beyond devastated, cried so much those few weeks, we had test after test to rule things out, were told a 1/35 chance of Down’s syndrome, then told it could be cardio issues with heart valves etc, but the FMU took great care of us and we were supported and had everything explained to us at every stage. I was terrified of the risk of miscarriage just by having the procedure. Cut a long story short I’m so happy to say I delivered a healthy baby at the end of it all. I would say don’t think of what could be, deal with what is on your plate today and whilst there is a risk, it is not confirmed until it’s confirmed so try and not think about the worst case scenario (very difficult I know)
Really feel your pain and longing. We are now about to have our first egg collection after another 2.5 years of secondary infertility. Btw I’m 37 and was 34 at time of last diagnosis. All the best to you 🙏🏼
Hi, Thank you so much for sharing what happened to you. I'm so pleased to learn that you had a healthy baby following so much worry and trauma. It is good advice to try and focus on today rather rather thinking too far ahead, I admit I will find that difficult to achieve but I do believe it's true so I will try. After your CVS test came back, did you have other tests to explore other things such as structural issues? Thank you xx
Yes I was then given cardiology scans as they said once chromosomal abnormalities was ruled out that could be the next possibility, they explained it to me like a check list, and to work through each test and tick off until you get to the end where they sometimes can’t offer an explanation for high NT, but that lots of women do go through this stage and come out with a healthy baby, and you can too 🙏🏼 It’s the not knowing that is harder than anything else I know. I was 20 weeks pregnant before I was discharged from the FMU and then given additional care at my local hospital who delivered my baby. I never thought I would be bringing home a live healthy baby I think we always feel that way don’t we because of this treacherous journey 😔 just lean on whatever support you have and we had fantastic care at hospital was told I could come in for cuppa and a chat whenever I wanted to or needed it by the midwife in charge. Don’t be afraid to ask for more explanations. Will be thinking of you. xxx
Firstly I’m so sorry to hear this news and I totally understand your anxiety and stress as it’s happening to me right now too.Week 14 and I had the CVS yesterday.
Mine was from blood test results not fluid and I’m absolutely devastated too.
I’m waiting 3 days for the results and really have no idea what to feel other than grief.
Last week I had my 2nd blood test for this and was told a 2 week wait.
The call came earlier for CVS
Somehow you make it thru the days with supper and love from the people that mean so much.
The procedure wasn’t pleasant but it also wasn’t the worst thing ever I asked not to see the screen and also not to see the needle they put a make shift screen up and my mum and wild wife help my hands as I did deep breathing. 2 injections of anesthetiser which stops the pain on tummy.
It’s a tough journey my darling all I can do is tell you I’m in this time too look after yourself try and eat and sleep well.
I’ve waited years for this pregnancy it’s so unfair the wait is equally so unfair.
Midwife gave me Ark details a company who helps women like us in our situation Google that could help.
Gosh I'm so sorry to hear you are in the same position. Words cannot describe how awful a place it is to be in. Arc is a good recommendation, I was not told about it at my appointment which is quite poor as it looks like it is really useful to know about. You were allowed people into the actual appointment? I feel that would be reassuring if so. I will be doing the same as you and not looking as I think that would cause additional distress at an already hard time. Have you experienced pain following the procedure? I know 48 hours rest is required. Like you, I have waited so long for this pregnancy and it is devastating to face these sorts of issues. Thank you so much for responding and I send you healing thoughts too xx
I'm so sorry to learn of the statistic you got from the NIPT. It's such a difficult road and I am actually struggling to understand the complexity of my own feelings. I totally get about being heartbroken, I feel the same. It must have been a shock for you to learn at 14 weeks that something wasn't quite right when your 12 week scan was normal. That's very difficult to come to terms with. Do you have some good support? When do you expect to hear back with the conclusive CVS result?xx
Little update - After begging to NHS to bring my CVS scan forward they found me a slot and I went along today. But more bad news...they could not carry out the procedure as they could not access the placenta without causing too much risk. I have therefore opted for NIPT whilst I am awaiting the amniotic test but the latter cannot take place until week 15. Feeling so broken and lost with it all and the waiting for test results and more procedures is absolutely horrendous. X
I’m so sorry to hear your update and that it means more waiting for you which must be agonising. We have just got back from our 10 week scan where we were told there was large amounts of fluid by the head, neck & torso. She did not give us any fluid measurements or stats but she was clear in saying it was not good news. We are absolutely devastated after such a long journey to get to this point. We had the NIPT - IONA tests today too so will now just have to wait. They said 3-5 days from when the sample is received at the lab so god knows what that actually means. When will you have the NIPT? Sending lots of love & strength 💞xx
Hi Picalilli. I am so sorry to hear that you are in a similar situation, especially after having already faced so much trauma getting to this place. I saw your main post and that you had early scans, I too had early scans where we saw a healthy heartbeat. I felt everything was looking good as a result of this and think I'm still in shock at what we have been told. Did you have a private scan or was it NHS? I have not heard of the NIPT IONA . We had the NIPT bloods taken at a private clinic today and will expect our results in approximately ten days. We have been given statistics for various things which are not filling me with hope, our fluid was very high. I hope you were well supported at your appointment, it is very difficult news to hear and make sense of. Almost impossible to make sense of when you are waiting for further results. There is nothing I can suggest to make things better, as you can see from my post I would love advice on how to cope, but absolutely happy to talk on private message to provide mutual support if that is something you would like xx
We had our scan & bloods at our private IVF clinic. I think they’d offered/suggested them because of my age and previous losses. I’m a little confused by it all if I’m honest as there was so much to take in during such a short space of time. I think the IONA is just a certain type of NIPT blood test and another one offered by different clinics is called the harmony test. They do a scan as part of the package where they are specifically looking for excess fluid/potential markers of abnormalities. I don’t know whether the fact she gave no fluid measurements was a bad sign (I.e because there was so much around the head, neck & torso) or whether they just don’t measure at this stage (as I know most measurements discussed by others refer to the 12 week scan). They had initially said my husband was not allowed in with me because they had recently increased their COVID safety restrictions again. But I pleaded due to the fact we had had bad news at a similar timed scan before and so I was feeling quite anxious. Thankfully she allowed it because I don’t know what I would have done if I’d been on my own. I’m sorry that the stats you have been given seem so bleak. It must make the wait even more tormenting. Sending huge hugs 💞 I’m hoping to speak to the midwife on Monday to see if she will give us any indication of statistics based on the scan because the sonographer couldnt. I’m trying to hold on to hope of a miracle but am just feeling pretty broken that once again we seem to be the unlucky ones 😢. Thank you for the offer, I’d very much like to stay in contact via pm to offer mutual support xx
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