6.5 mm NT scan- support needed

[Guest2491]

Hi there,

We had our 12 week scan yesterday where I was 11+6, which showed baby had an NT measurement of 6.5mm. Obviously this is really high.
We’re waiting for the results of the initial blood tests & then we’ve been offered NIPT which we’ll take.
I just wanted to know how other people have experienced this situation who also had a NT of around 6.
I’ve resigned myself to the fact that the likelihood is not great.
Thanks!

Hiya, so sorry you are going through this. We had a scare from our 12 weeks but luckily it was all ok, try to keep the hope going. I found a lot of help from the mumsnet antenatal testing forums, have a look there.
Wishing you all the best xxx

The NT measurement is not the be all and end all! It can be in fact really inaccurate that’s why it’s not diagnostic and is rather part of a screening test, part not the whole thing.

I know it’s really hard but do not cross bridges before you get to them.

I had a terrible scare with my first and her NT measurement, the sonographer even said she had fluid all around her organs and when a consultant looked at the images it turns out the sonographer was mistaken

Just to add I had the same as @Sleeplessem, We were told at 10 weeks, way before they should even comment, that the NT was large and actually when another sonographer looked at the pics they said they were measuring the sac and not the neck - caused two weeks of hell! Luckily, we got our money back and would never have a private scan anywhere but the FMC in future, they were amazing!

Thanks @happygolucky20 & @Sleeplessem!

It gives me comfort to know that other people have gone through similar things & come out the other side. Unfortunately in our case I think the coordinator on the day also reviewed the scan & when they showed us we can clearly see it too... not sure if it is a mistake.

It feels painful to hope but we're taking it one day at a time.

@happygolucky20 sounds like we had an identical experience, same gestation too.

@Guest2491, this probably won’t make sense via message so sorry if it doesn’t, but the reason dd’s NT was large on my first scan was because the sonographer measured the entire shadow error below the neck on the scan (so you know on your ultra sound image you can see babe’s head, our sonographer basically took the NT measurement as all of the black underneath). It wasn’t til my second pregnancy that I realised how off that was, it’s way more intricate than that and definitely not the black space that the previous sonographer did. A similar thing could have happened in your case.

I’d wait for bloods and if you are super duper nervous and can afford it, consider a harmony or other NIPT test, I think harmony you can get the results in 5 days xxx

Hi! We had a higher NT measurement (7mm) at 12 weeks and were immediately referred to the FMU. We have had a CVS, multiple scans and nothing else has shown up as of yet. I'm 35 weeks and still plodding forward. We know we're lucky and I've read enough that chances get lower as NT gets higher but as someone else said, the NT is a screening tool not a diagnostic so as hard as it is (and it's painfully hard) try and take every step as it comes.

@Sleeplessem & @milkshakeandchips5 it means so much to hear from other people who have been/ are going through it!

We've been offered NIPT but I think we're going to opt for a CVS test instead to know for definite & find out a bit quicker.

Whenever you speak to a healthcare professional they make it seem hopeless so we feel like we have to prepare for the worst.

There was nothing obviously wrong with babies head & he or she was kicking around.

Taking it one step at a time & trying to keep busy!

@Guest2491 could you see baby’s nose? A nasal bone is a good sign!

A sonographer shouldn’t be giving you any sort of diagnosis or frankly a midwife based on just an NT measurement, not to be rude to them but they just aren’t qualified to do so. So if you’re hearing all doom and gloom from them, push it to one side.

I can’t tell you what your outcome is or will be BUT on my NT measurement DDs was 3.7 but from that and the apparent fluid the sonographer saw all over, I was take to the bad room and given leaflets on termination. Point is, there was absolutely nothing wrong, and just from mumsnet and my experience irl, this seems to happen a lot XX

I would have an amino but be aware not everything shows up unless you have a proper full micro array and even then things don't always show up. I had a high nuchal fold measurement ( 3.2) and a cvs and was told my son was NT but he isn't . Do you have any other soft markers ?

We had a measurement of around 6.5 I think. Sadly ours was a marker for T21 and we ended up having a TFMR.

I am however (a few months later) now pregnant again and have just had a normal 12 week scan. It was just unlucky for us. I hope you get better news but also know that a lot of women have been through this horrible time. The worst bit was waiting for the call after the CVS.

Just here to offer support, we had 12 week scan at 13+2 this week, scan looked fine but I had the call from screening mw yesterday to say we are high risk for DS 1:45, I went for the NIPT test this morning, now the anxious wait… I hope everything goes ok @Guest2491 x

@Guest2491 we were also given incorrect information at the first scan (hydrops) and an awful diagnosis - I was asked if I wanted to schedule a termination. I was also sent for bloods only to be yelled at by the receptionist for not speaking clearly or having a referral card as I sobbed in the middle of a waiting room of heavily pregnant women on my own. It was the most horrific experience.

The CVS at FMU was completely different. I was given space to ask questions, fully supported by a midwife and two consultants (one an expert in Ultrasound who dismissed hydrops) and they were realistic and practical but also kind. I stayed under observation with them until last week and it was amazing.

Moral of the story, ultrasound is not an exact science and some people are d*cks.

@milkshakeandchips5 similar experience to myself! Xx

I had a score of 6.8 and bloods showed 1:20 downs 1:80 for the other two. They also found fluid around babies chest when scanned again at fmu. Due to position of placenta I couldn’t have a cvs so had an amniocentesis at 16 weeks. This came back clear. At 22 weeks they found a cyst on baby’s next. I’m now 25 weeks and the cyst has gone, he’s measuring where he should be and there’s only a tiny chance of an unfound condition x

Thank you all so much for your comments! It just shows not everything is straightforward. The initial shock & doom is horrific.
We had no other soft markers on the scan & nothing was mentioned about baby’s face etc. They were kicking around in there and heart was beating away.

Update- I’ve just had a call from the hospital saying my blood test results can’t be properly released yet. They need the head scientists to check them in the morning because they’re confused. Apparently my overall risk has come back as low chance but based on my NT measurement alone they fully expected it to be high chance... it’s not bad news but it’s not good news either.
Another wait tonight until hopefully an update tomorrow...

@milkshakeandchips5 I am so sorry this was your experience... people can be awful. The waiting room full of happy round tummy mums is super hard when you’ve been given bad news!!

@Mayneedanextraroom I hope everything goes ok for you too! Let me know xx

@Guest2491 I’d say your low risk then sweet and they just want to double check rather than give you false info, could be a strong chance your measurement was done wrong!

Keep us updated though yeah, I’ll be thinking of you!

God I hope so! But also don’t dare to hope... I’ll definitely keep you posted. Thank you so much for your support xx

Will have everything crossed for you all xxx

Update- combined test has come back as low chance... they’re surprised due to the NT measurement but it’s the best news we can hope for at the moment.
Having a CVS done next week.
One step at a time...
How is everyone??

@Guest2491 I’m sure you’ve thought it through but are you sure you want to go with a cvs? If they believe you are high risk they ‘should’ offer you a NIPT test. Private is an option too if you can afford

I’m so glad it’s low risk, I bet you they just measured it wrong! Xx

@Sleeplessem we were offered NIPT but because it’s so new via the NHS it will probably take a couple of weeks to get the results back.
I know there’s a risk with CVS but I’m a bit torn between wanting it sooner & definitively if that makes sense??
Thank you!! We’re not out the woods yet but it’s the best news we could hope for!
I’m not sure, even to us the NT looks really clear on the scan pic... now we’re under consultant care so regular scans which should mean we can pick anything else up! X

@Guest2491 fair enough! The risk with this procedures is really small anyway and sometimes the peace of mind after all that worry is worth it!

I’m sure everything will be fine and it was probably a mistake or some sort (happened to me and loads of others). I saw a consultant at 12 weeks with my first (due to NT measurement) and I was amazed at how much detail he could see, he practically did a full anatomy scan at 12 weeks, he could tell the gender too, so I’m sure you’re in wonderful hands moving forward!

Keep us updated though

The only risk is pretty much if they stab the needle in the wrong place . As above I would ask for a full array and cvs . Unless of course you don't mind if the baby has special needs but talking from experience it's tough !