Very high NT, clear CVS results

[SLB1994]

Hi all,

This is my first post and I have no idea how this all works but just came for similar stories, I've found some on the website but just wanted to see if there were anymore.

I'm 28 years old, this is my first pregnancy, I had my 3 month scan last Monday and it was all very negative I had a high NT of 14mm, the consultant said this was extremely rare and took me and my partner into another room and said this is a very abnormal scan and I am high chance of miscarriage or still born and asked me if I'd like to have a CVS test, me and my partner said yes and I had the test straight away luckily.

That testing has come back clear and we now have our next scan next Friday to see if the fluid has gone down and how the baby is.

As the scan last week was very negative I sort of writ of the pregnancy thinking it's definitely not happening, now I don't know what to think or feel and my emotions are everywhere.

Does anyone have anything similar? I know searching google isn't the answer but you just can't help it sometimes! X

Hi @SLB1994 so sorry this happened to you. How are you now? Great your CVS results came back clear! How did your next scan go?

I can't help much but I am now over 17 weeks and going through something very similar. At the scan that accompanied my NIPT at 11 weeks, the NT was 3.7 and then at my official 12 weeks scan it was 4 something.

I then had an amnio and blood taken (for a microarray) at 16 weeks as my placenta was in the wrong place for a CVS. The scan performed before the amnio showed the NT was now normal and everything else looked okay, and the results from my NIPT and initial amnio results have come back clear. All positive (hopefully). I'm now waiting on my full microarray results - did you have this done too?

In case the microarray results are all clear I have booked a 20-week anomaly scan and specific cardio one at the Fetal Medicine Centre to get the best people to give a view on the structural and cardio side. It is strange to think I may be over 20 weeks/halfway through before knowing if the baby is okay.

This is my second pregnancy, the first was without issue so it's weird going through all of this with a cloud hanging over us. Fortunately, only my husband and mother know.

Sending lots of love your way - it is a horrible thing to have to go through. x

Thanks so much for replying.

The next scan the fluid around the baby which was classed as Hydrops has gone but the fluid behind the neck is 18mm which is so high compared to some of the stories I've read. 😢 everything else on the scan was normal though?

They are now sending me to Kings College Hospital this week for an echo cardio scan, a normal scan to see how baby is doing and also a genetics consultation as she mentioned something about Noonan Syndrome. Me and my partner are still none the wiser really, so I'm overthinking everything still with no answer.

Yours sounds positive with everything coming back clear and also the NT going down but agree it's like a cloud over you, I'm sorry you've had to go through the same it really is torturous.

Xx

@SLB1994 wishing you and your partner all the best for you appointments this week. Will be thinking of you xx

Hi @SLB1994 I'm really sorry you're going through this. I had something similar with my first daughter. The NT measured over 7mm - like you, we were told it was very unusual and unlikely to be a viable pregnancy. CVS came back as normal and the fluid went back to a normal over the course of 10 days. They never found an answer or explanation for what had happened or why it had been so high. I hope it's a positive outcome for you. I remember the rollercoaster like it was yesterday x

@Dunkindonuts8 thanks for the positive story they're nice to hear, I have my echo scan today so will hopefully get some answers today X

hi @SLB1994 just wanted to see how you were doing and if the scan you had gave your more answers x

@86Shropshire Hey, so they couldn't see anything on the cardio scan but they done a regular scan and the NT was still 18mm, they were guiding me to terminate as my blood pressure was really high and they thought I might have mirror syndrome.

Now at my hospital as we speak and my blood pressure is up and down but due to the circumstances they said it would be raised because you're stressed.

I have a 20 week scan and also a 21 week cardio scan, I'm terrified of miscarriage at a later stage and if I have to give birth. I really am none the wiser and don't know what to do.

How is your situation? Hoping positive for you Xx

@SLB1994 I just wanted to ask how are you? I have been thinking of you!

I had my microarray results back yesterday and they came back normal. I am now waiting on the Cardio and Anomaly scans which take place on the 23rd.

Like you the thought of carrying to 20 weeks then having to terminate is just such a terrible thing to contemplate. 😔

xx

@86Shropshire Hey - I'm okay thank you, I hope you're doing okay too.

That's great news about your tests, it sounds like it's heading the right direction!

Unfortunately for me, even though the cardio was clear and the CVS was clear, the NT is still 18mm and is around the babies head, neck and some on the thorax. I've been given high percentage that the pregnancy will not go full term or I will give birth to a stillborn and the Hydrops will move to the heart, lungs etc. So we have made the heartbreaking decision to terminate.

It really was the hardest decision, but I spoke to some specialists and midwives etc. and they have said if the NT had gone down there would've been a bit more hope but they'd never seen a NT that big before. The baby would be very poorly to if it was to go full term.

I have spoken to a Marie Stopes clinic who can do a surgical abortion rather than me give birth as my hospital said I'm too far gone (coming up to 19 weeks).

I also had a blood pressure scare where it was sky high and they thought I was developing mirror syndrome which is basically me developing what's wrong with the baby to me and me becoming hydropic. All very scary.

They've said it's extremely low chance to happen again as it doesn't appear genetic, so they said just try again. 😢

I'm giving you all the positive vibes in the world that your pregnancy goes okay, and it looks like it's going to be, but I understand all the waiting is very stressful and upsetting, but try to be positive and enjoy your pregnancy ❤️

@SLB1994 sending lots of love to you. I had a surgical termination after a positive screening for Down Syndrome. The procedure was done under general anaesthetic and I felt very little discomfort afterwards and only very light bleeding. The physical recovery was quick and a few weeks on I am feeling much better.

@Iusedtobedontcall thanks so much for this. Hoping it all goes smoothly. X

@SLB1994 I just wanted to say I am so sorry to read your sad news. Sending you love and strength at such a difficult time xx

Dear @SLB1994 firstly I am so sorry for the late reply - for some reason I didn’t get a notification you had responded above.

I am so, so, so sorry to hear your news and that you are having to go through all this. I will be thinking of you this week and hoping the operation goes as well as it can. I am sure they will look after you sensitively and with lots of care.

Sending lots of love, hope and strength your way and best wishes for your recovery xx

I just wanted to give an update to my post in case anyone is in a similar position to mine one day.

I went through with the surgical termination with Marie Stopes yesterday and it went very smoothly and I didn't feel one bit as I was put asleep, took around 10 minute and I was back in a little ward with tea and biscuits in half an hour, I just have some bleeding after, it's more the mental stuff after rather than physical.

I had a call from the genetics blood testing for me and my partner and the baby. The baby had Costello syndrome which is a very rare genetic disorder, which if the baby survived, would be a major abnormalities and the baby would have heart defects, feeding defects, the list goes on. The doctor said we made the right decision really as it would've changed our lives forever. We asked what caused this and they just said it's just really bad luck, our genes are fine and would 99.9% wouldn't happen again.

Obviously anyone that has carried on with their pregnancy, I admire you, but for me and my partner we couldn't go ahead.

If anyone is reading and is in a similar position, just know you are making the right decision for you and I wish you the best of luck with everything ❤️

Sending you strength @SLB1994. It was really selfless of you to update to maybe help someone in a similar situation in future x

So sorry to hear SLB. I also had a surgical tfmr yesterday at hospital (I'm not in the UK). The last few weeks have been hell after infertility and previous losses.
Wishing us both lots of peace and healing on this shitty journey ❤️

@onelostsoulswimminginafishbowl
I'm so sorry to hear that, honestly so many of us go through it and it's such a taboo thing to talk about. I'm so glad sites like this are around.

I wish you nothing but the best ❤️

Your right it's a pretty shitty, but defo makes you a stronger person. X

@Dunkindonuts8 thank you - defo would like to help other people. X

Dear @SLB1994 you're so thoughtful to have shared all your steps here for the benefit of others - it will help so many! We would have made the same decision as you in the circumstances.

I am so pleased you were looked after so well by the clinic and it all went so quickly and smoothly. Wishing you a fast and healthy recovery period.

Hello,

I was wondering if you would be willing to share a bit more of your story. I am currently 26 weeks pregnant and have just been given a diagnosis of costello syndrome for my baby girl. How many weeks were you when you has the termination? Also is Marie Stopes a private provider? Does a surgical termination mean a c-section? I am terrified of all the decisions that lay before me and am aware I am running out of time to make a decision as I am so far along. I am so scared

First time on mumsnet - the above was @SLB1994

@M0903 of course - I'll private message you x

@M0903 I've private messaged you, let me know if you haven't received x