12 week scan - nuchal translucency

[Dillydilly55]

Hi,

Had my 12 week a couple of days ago and the fluid at the back of the baby’s neck (nuchal translucency) measured high.
They said the limit is 3.5 and it came out at 3.9.
I was really hoping for good news, that everything was fine. They have done my bloods to go as part of the combined test and send them off as urgent. I’ll also receive an appointment for more tests.

I’m supper confused as well. Interms of what they will do at the following appointment.

They spoke to me about invasive investigation which the appointment is not for that. And explained the risks of miscarriage and that most women decide to go private as it’s just a blood test.
From the research I’ve done online “the safe test” is all over the Nhs. I also found an article from 2016 saying they now do it on the Nhs.

The price to go private is ridiculous! Cheapest I’ve found is £400.
I’m not poor but I’m not rich. I don’t have that kind of money.

Anyone had a slightly higher reading and everything has turned out to be fine.
So emotional right now :( xxx

I would first see your GPnor midwife to find out if you can take the test on NHS. If not, I would take it privately. It’s quick and results come back fast. It would be better to do that first, then go straight to invasive test. We did the harmony test this time around, as with our first and second it wasn’t really done yet. Everyone we know having kids now opted to do it. Well, the majority anyway.

I haven't, but a close friend did she was also 41 so higher risk because of her age. She opted for the private harmony test, as its less invasive etc, and everything was fine.
I think the NHS test is safe, but it does come with additional risks and is more invasive.
I would try your hardest to get funds for the harmony test if you can - as it is so straight froward and fast.

The Harmony (and other brands of NIPT tests) are screening, not diagnostic tests.
CVS and Amniocentesis, which is what I think you are referring to is an invasive but diagnostic test and gives certain result as opposed to a probability of a result.

If you are not sure what your next appointment is for, ring them and talk through with them - it is a lot to take it.

I had the same measurements but when they did my blood test they gave me a 1:5 chance of my baby having Down's syndrome due to the results. They will offer you a cvs or an amniocentesis test, both have very small risk of miscarriage, the harmony test is only available privately which is the blood test! The cvs and amino will give you a definite answer as to whether your baby has a chromosomal abnormality and the harmony will just give you a more precise risk factor it is not 100% accurate! I decided against having anymore testing as I had had 2 previous miscarriages and bleeding in that pregnancy, the harmony wasn't yet available. I had lots of extra scans throughout the pregnancy to check his heart and other organs, no problems were detected!
My baby was born with Down's syndrome and he is now 4 and absolutely amazing!
Good luck op.

I had the NIPT blood test (Harmony and SAFE are just different brands of the blood test) which was £400 but had it prior to 12 week scan.
In your position I’d go straight for the diagnostic invasive test (amino or CVS depending on dates), the risks of miscarriage are low.
In my case the NIPT came back low risk 1/10,000 but if it hadn’t we’d have gone for CVS to confirm.

Meant to add, if you paid for the blood test and it came back high risk you’d still have to have the diagnostic test anyway so there’s no point in the blood test. It’s great for people like me that do it early (I was almost 41, DH almost 46 so we were high risk) we had it at 10 was, but bit pointless after you have the NT result.

*had it at 10 weeks

Depends on whether you would want to keep the baby if there were problems found. If yes then you could just opt for extra scans (you can often get 3 or 4 for the cost of the Harmony type tests) and an amnio when you are well into the third trimester when the only risk of the procedure is early birth (not miscarriage).

If you wouldn’t want to keep it then it’s better to move fast. In which case you could go the Harmony route (their low risk results are considered accurate) with CVS / Amnio to verify any high risk result. A lot of the harmony tests in the top London private hospitals come with a CVS /Amnio included and you can often get the blood results and procedure done the same day.

It's a scary time, sending you a big internet hug.

My daughter had a very large nuchal measurement (as well as additional fluid around lungs and stomach) and everything turned out fine. We had an amniocentesis (they thought it extremely likely to be a chromosome abnormality and we wanted to know for sure what was going on) which gave a clear result and she was born healthy.

In my area if you have high risk results from your NT scan and bloods, they offer you the Harmony test at a reduced rate. Worth asking if your hospital offers the same.

I don't know what the next appointment will involve test wise if it's not cvs/amnio - do you have a midwifes phone number to call and go through it? I know it's super confusing when no one explains exactly what's happening and you only think of all the right questions later.

Our following appointment Trent was to discuss blood results, options and to meet with the consultant! They may well book you in for cvs/amino if that's the route you want to go.

Sorry you are going through rough this @Dillydilly55 💐
I had exactly the same measurement a few weeks ago. It’s so stressful.
We opted for cvs as I’m almost 40 and wanted to know what was what asap. The blood tests give you a percentage chance - not a definite yes or no, and we didn’t feel that would fully put our mind at rest. Luckily, our results were all clear.
We had our 20 week scan and that was also all clear. We still have to have a cardiac scan in a few weeks as the raised measurement can also indicate heart problems. But our little boys heart was looking great at 20 weeks, with all the major structures seen, so we’re not too worried.

It’s so stressful & horrible to go through something like this. Take good care of yourself and keep posting here if you need support. I’ll be thinking of you.

I had the NIPT test done through the nhs it still cost £275 but was cheaper than other private clinics. It’s really a personal choice whether you go ahead, our risk went from a high risk 1:60 to low risk 1:500000 for downs. The results came back within a week

We had a high NT reading, was 4.2. Bloods came back with a 1:5 chance of downs. I was 35.

Decided on the harmony test as I'd a mmc and didn't want to take any chances. Results took a week and came back 1:10,000. We were happy with that and didn't want any more testing.

I was advised that the nipty test wasn't diagnostic yet but was used like that in Australia (I think) and probably would be here in the future.

If the results had been indicative of any chromosomal abnormalities I would have had an amnio. Just to be 100%. We probably would have terminated but thankfully didn't have to make that decision.

I do believe that some areas of the nhs offer nipty testing but most don't.

For me it was worth the money as I did relax about the fears of downs etc after the test results.

I had the harmony test but my local hospital charged £285 for it not £400. That still felt like a lot of money but was worth putting my mind at rest. I'm a bit of a worrier so if I'd had one of the procedures that come with risk (although very small) I'd have been paranoid for days/weeks.

My son had this at the 12 week scan. We didn't have any further tests and it normalised by week 20. Don't do the invasive test it's too risky. I'd either wait until the next scan or get the bloods test done on NHS. Good luck and congratulations!!

Thank you everyone for your reply’s.
I have found out that the appointment that I’m booked in for is a fetal med scan.
In a way I’m looking forward to it to see if there are and changes and to get a second opinion.

I still don’t have the results from the combined test but everyone who I have spoke to / read about only seems to have a higher chance because of age. I’m 25 so what other things do they factor in apart from combined results for working out your chances? Again not including age ? Xx

Thankyou xxxxxxxx

I'm 29 but there were 2 things that caused me to come back as higher risk. I had a high level of the HCG hormone in my blood and a low level of the Papp-a protein in my blood. These two things together can be an indicator for downs syndrome but the harmony test has come back as fine.

That’s reassuring x
@Lumosknox are you still pregnant or have you given birth?
Did everything turn out fine?
The paranoia is unreal!
Thanks x

@Dillydilly55 I'm 18 weeks now and hopefully fine. I may have some extra monitoring because of the low papp-a level and have a consultant appointment about it tomorrow.
I think a lot more women have this horrible time after the 12 week scan than we realise and I really feel for you because it was horrible worrying and waiting. I get the impression that with the vast majority, there doesn't end up being a problem though and that's what I tried to tell myself at the time.

@ Lumosknox thats fab !
Did they do a fetal med scan for you?
And did they offer you further testing like CVS ? I’m assuming you chose the harmony over it? Was that private? Have they also recommended a fetal cardiac scan at 20w x
Sorry 100000001 questions x

@Dillydilly55 they offered amniocentesis as I was about to be 14 weeks but they thought harmony was best too. It was technically private but I had the blood taken at my local hospital (Swindon) and it cost less than a private clinic. They offered but I'm not sure if it's the same with all hospitals?
I'm different to you because the neck measurement was within average it was my bloods that were the concern. I think I'll be offered an extra scan towards the end to check growth because of my papp-a level. So much stuff I had never even heard of until this pregnancy business!

How are you @Dillydilly55? I hope things are going ok.

I had this extra fluid when I was pregnant with my son. We decided against doing anything and by the 20 week scan it was back to normal. X