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High nt, normal cvs results & seemingly normal anatomy scan.

140 replies

katiecee93 · 02/11/2020 15:11

Hello,
I’m new here so I m sorry if it is a long post or if I’m rambling. I feel like people on here may have more of an idea of what I’m currently going through and I am desperately seeking answers!

At my dating scan (12 weeks) I was told that baby had a high nt fluid of 5.9mm. we had all the blood work done, referred to the fetal medicine unit and told what to expect etc. The bloods came back normal with a low risk for downs and trisomy 13 and 18.
A week later we went to the fetal medicine unit where they scanned again and did the CVS test. We got the first part of the results 2 days later which came back with no abnormalities, then we Waited 4 weeks for the rest of the results, which again came back with no abnormalities. Since the tests came back normal i was referred for a fetal echo, which I am currently waiting for.
I had my 20 week anatomy scan, everything looked fine structurally, though when they measured the Nuchal fold again it measured at 7.8mm, but she said it looked different sizes at different angles. We were seen by a consultant to explain the still increased measurement. He told us that he could have every sonographer there scan me and they would get 3 or 4 different measurements as they’re not 100% accurate. he told me that from getting normal cvs results and everything he could see from the scan, he wouldn’t really see much point in doing another detailed scan and just to keep regularly checking babies growth.
I’m trying to keep positive in the fact that everything seen on my scan was fine, but the upcoming echo is making me so nervous and I have the worst feeling!
I’m just wondering if anyone has been through the same and what the fetal echo results ended up being?
Thanks

OP posts:
Usplusone · 06/12/2020 09:59

Hi @S83M sorry to hear you are in a similar situation. My best advice would be to take it one day, one test, one result at a time.

There are plenty of positive stories if you need some hope. I found preparing for every outcome helpful, and there's plenty of support on here, though I appreciate everyone copes differently. I also found Mumsnet much better than Google!

Good luck, I'll be thinking of you, the wait is the worst 💐. We were given poor odds but now have been told we are 99.9% likely to have a healthy baby. Still not completely relaxed but putting my faith in the fetal medicine consultant and trying not to worry x

S83M · 06/12/2020 10:21

Usplusone, thank you so much for replying I feel so much better about things now still more terrified then I have every been in my life, but a lot more positive now I have with women in the same postion and it is not all negative outcomes. Like you say the wait is the worst roll on Tuesday for my CVS, then the wait for the results which I reckon should be back just before xmas 😬😬. I am so glad you have had a positive outcome. I will keep you posted. Thank you again xx

Tillyfloss1 · 06/12/2020 12:53

@S83M good luck and I will be thinking of you. I didn't find the CVS painful just mildly uncomfortable. The worrying and the waiting is awful I found it extremely hard. Xx

S83M · 06/12/2020 13:11

Thank you Tillyfloss1 its comforting to know I'm not the only going through this right now. Just wish I could speed up time xx

S83M · 08/12/2020 17:27

Today was the day of my CVS. It couldn't be done has my uterus was tilted back so couldn't get access to the placenta. Going back at 15 weeks for an amnio, everything else on baby looked good. Prognosis was much better from the consultant feel a little more at ease even if we haven't got any results yet. Xx

PinkertonRab · 08/12/2020 22:42

Hi all. Just following this thread after finding out at 12 week scan (11+3 actually) that we had NT of 6mm not just behind neck but all around. They didn't even have the blood results back but gave a pretty negative view.

CVS booked for next week so holding on to your positive stories until then.

Tillyfloss1 · 08/12/2020 23:18

@PinkertonRab thinking of you, the CVS is ok, I had mine a few weeks ago now. Stay positive xx

PinkertonRab · 09/12/2020 10:19

@tillyfloss1 thank you. The waiting is the worst and I am not expecting a good result as the consultant was very negative. We have the cystic hygroma which I think is what they mean when they say fluid all round. There was too much fluid to even give as assessment of the general development of the baby.

8 days seems like forever to wait for the test and with Christmas I'm not sure when we will get the results.

When are you due your next update?

Tillyfloss1 · 10/12/2020 12:40

@PinkertonRab I had a fetal echo scan last week where they said everything looked as it should at that stage. The fluid is still there with a lower measurement but it's not as relevant now the baby is bigger. I have another consultant scan at 20 weeks. If that is 'normal' I will be referred back to midwife care.

There's nothing anyone can say to you that will stop you worrying and I can honestly say that this is one of the hardest things I've ever been through and I've had pregnancy loss, ectopic, bereavement. It's the limbo feeling that is pure torture. I think I wrote about it on this thread but I also found the initial consultants and midwife to be extremely pessimistic and grim in their outlook. This must be just to manage your expectations but in my case, thankfully, it is now looking much more likely I will have a positive outcome.

All I can say is hang in there and if you need to talk these threads are full of support and love. Whatever happens you will get through this. If you are able to let us know how you get on and I will have everything crossed for you for the testing. Make sure you ask them exactly when you can expect to receive them, especially with Christmas coming. Sending you lots of love and support x

PinkertonRab · 10/12/2020 13:40

Thanks for replying and I am so pleased that your news is looking up.

My bloods were back today and we now know it's 1:70 for Down's and 1:8 for Edward's or Patau's. Still a long wait for confirmation but hard to be optimistic at this point.

Usplusone · 14/12/2020 08:47

Hey @Pinkertonrab been thinking of you, how are you doing? Is your CVS this week? If you have any questions or concerns we've all been there and here for you. I hope it goes ok x

weivfgotthis · 14/12/2020 17:20

@PinkertonRab
I also had a CH 5 years ago with my first baby. We had the doom and gloom diagnosis, went through the testing and scans and I'm happy to say my little girl is now 4, at school happy healthy with no issues.
I'm on my second pregnancy now and a raised NT this time, we are trying to be pragmatic and think we have beaten the odds before we can do it again. My 20 week scan is next week so I'm keeping everything crossed until then.
Nothing you read, or anything anyone will say will make you feel better just take one test, one day at a time
Good luck x

PinkertonRab · 14/12/2020 22:55

Thank you both. That's the first I've read of a CH not ending in bad news but as you say, nothing is reassuring right now.

CVS on Thursday and it feels like forever to wait. Very nervous as don't do well with needles and scared about the procedure but faced with our odds, I had to find out for sure. @usplusone how long did it take for the CVS?

We've previously lost a child (completely unrelated to this) and I know I can't face it again.

@weivfgotthis - did you have the tests this time? I know I'll get the main 3 results back quickly but I haven't found much on what the full results look for. I know it's looking at the other chromosomes but does that include other life threatening things? Or less severe abnormalities?

Usplusone · 15/12/2020 18:29

The actual procedure wasn't long, maybe 20 mins in total but the actual bit with the needle was probably only a minute or two. I found the thought of it pretty distressing but it wasn't particularly painful or long lasting pain anyway. It felt good to me to have set a plan in motion too.

My first set of results (trisomy results) came through in 3 days, the second (array CGH) took 3 weeks cos they had to wait for my cells to grow and apparently it was a small sample. I was initially told 2 weeks. I was reassured by the consultant that array CGH would be what is done to check a newborn baby for chromosomal problems and checks for most common chromosomal abnormalities. Can still miss small chromosomal changes but captures most I believe.

The wait is tough, sorry you're going through this. I agree one day, one test at a time helped me to get through it x

HT2101 · 17/12/2020 14:22

Hi ladies, just back from my dating scan and was told I had a NT measurement of 6.9. Absolutely heartbroken. Was taken in to a side room to discuss options & now have to wait until Tuesday for a CVS. By the way they treated me I don’t have any hope that I’m going to get miraculous good news. It’s a comfort to read your posts & know I’m not alone xx

Tillyfloss1 · 17/12/2020 14:41

@HT2101 so sorry to hear what has happened today. There is a lot of understanding and support on these threads and they have really helped me. It's a cliche but you really can only take one day at a time. Best of luck with the CVS, mine was very straightforward and not painful. Will be thinking of you xx

HT2101 · 17/12/2020 14:55

@Tillyfloss1 thank you for your reply, it means a lot. I just feel in a complete daze. Tuesday seems a life time away & knowing I will probably have to get through Christmas before I get any further answers is making this worse. Xx

Tillyfloss1 · 17/12/2020 15:01

I was going to say what awful timing - I really hope you don't have to wait too long for the results. Try hard not to second guess what may or may not happen and what you might or might not do. The CVS will give you definite results and you can process that at the time. Easier said than done I know. Xx

PinkertonRab · 17/12/2020 17:11

@ht2102 sorry to hear you are in this situation. I waited 10 days from hearing we had a NT of 6mm until today when I had my CVS. It felt like a life time and there os no advice I can give to help time speed up.

Like @tillyfloss1 has said, the procedure isn't painful. Mine took around 5 minutes and I've had a few cramps since but so far ok. I am hoping for results before Christmas but they said Christmas will slow things down.

Trying and failing to put it out of my mind for the sake of my other children.

Sending you so much luck.

katiecee93 · 17/12/2020 22:19

Just seen all your ladies posts! I’m so glad I posted this as it seems I’m not the only one who struggled in finding answers or someone who was going through the same! it’s the worst thing having to wait for your answers and I’m sending every bit of love you all xxx

OP posts:
HT2101 · 18/12/2020 15:23

@PinkertonRab thank you for your kind words. I went for a second opinion NT scan at the Fetal Medicine Centre on Harley street this lunch time. She recommended the CVS as it’s really the only way of knowing what all the issues mean. I also found out the baby’s bladder is larger than it should be, think she called it Megacytisis. Unfortunately with my CVS booked for Tuesday I think it will be after Christmas before I have anything confirmed.

@katiecee93 sending you lots of love, know you’re def not alone but I know that doesn’t help too much xx

jmm499 · 19/12/2020 21:21

Hi ladies, I am sending you all such a huge hug. I was where you are last Christmas and it was the most awful timing :( I really feel for you. Our baby had a raised NT of 4.7mm which we were told about at our 12 wk scan just before Christmas. We were booked in for a CVS at the beginning of Jan - but they couldn’t access the placenta safely so we had an amnio at 16 weeks in the end. It was a long road but our baby cleared each hurdle and arrived safely in July. I have never felt relief like it. I hope and pray you all have positive outcomes, hang in there and taking each step at a time is good advice xxxx

S83M · 19/12/2020 22:34

Jmm499
Thank you so much for sharing your positive story.
It's good to hear all can be well.
Having to wait until 16 weeks myself for an amnio is so hard, as the longer I go on the more I am getting to love this person growing inside me. I am staying positive and hoping for the best outcome in the new year as we will not get out results until then. Xx

jmm499 · 20/12/2020 08:32

@S83M sending you so much love ❤️ The wait is incredibly hard - it feels like time stands still. I’m keeping everything crossed for you Xx

Thisyearisshit · 20/12/2020 09:13

@S83M sending you love. I was where you are exactly 4 years ago, I still now remember each day feeling like a week in terms of the wait. It’s especially painful at this time of year and for you with the whole pandemic aswell. What date do you go? I will keep you in my thoughts.

My story unfortunately didn’t have a happy ending, And I had a TFMR. I fell pregnant again shortly after and now have a gorgeous 3 year old who’s results all came back completely normal.
I rang the charity ARC (have you heard of them?) and they were absolutely amazing, just sat and listened to me cry while I waited for the results of both babies.
Keep talking on here ❤️