Screening test results

[kittenpeak]

Appreciate I shouldn't come on here for firm answers, but just want to get an idea of what people's screening results are like and therefore where I sit (eg 1 in 19000 seems very low to me, but would be good to know if a lot of other people get 1 in 5000000?)

My details (1st baby)

Age: 33 (partner age 38)
NM: 1.8

Risk of downs: 1 in 6000
Risk of T18: 1 in 50000
Risk of T13 1 in 19000

My results have been considered low risk, but would still be good to know

Thanks all

Hi @kittenpeak. I’m waiting for my results to come back but if I got those results, I’d be happy with them. I wouldn’t consider any further tests etc.

Do you mind me asking what the fluid measurement on the baby’s neck is? Mine was 3.5

Hi @Sussexbysea thanks for your reply. Mine was 1.8.

Yes, they're very low odds. I would just be keen to know what others get (though I appreciate there are a huge variety of factors such as age etc, so impossible to get the "average" odds).

When did you have your test? My trust only call you if you're high risk, and will do they within 3 working days.

@kittenpeak those are very, very reassuring figures. The NHS definition of “high chance” is 1 in 150. Depending which lab your hospital use to calculate the results, 1in 50,000 is likely to be the lowest anyone ever gets.
An nuchal measurement of 1.8 is very average and so is reassuring.
It is important to remember that there are lots of risks in life. These are probably ones you don’t need to worry about any more!

@kittenpeak I had my NIPT bloods taken last week but they wouldn’t send them off until my combined results came back so they were sent off today. Results should be back next Tuesday. I’m so anxious about it all, I’ve had to stop working. My brain just can’t compute what’s going on and the possibility of what maybe happen.

I was referred to London and the consultant there told me he wasn’t allowed to remeasure the nuchal fluid, I was heartbroken. I’m just clinging on to the last bit of hope that the NIPT bloods come back low risk.

How are you feeling?

Hi @Sussexbysea I'm feeling fine, but I'm sorry to hear you're feeling so rotten. That sounds very stressful and you've every right to feel anxious. Rest assured you're in good hands. They might not want to measure your nuchal fluid again incase there is a change which may cause unnecessary stress or confusion. Thinking of you x

@Sussexbysea that sounds extremely stressful. At 3.5mm your NT was right at the point where a referral is indicated. What dod your combined test results look like? Do you know what the hormone levels were? You may find this link helpful yourmidwife.org.uk/antenatal-screening-tests/increased-nuchal-translucency-nt/
Hope you don't have to wait too long for your results

@Sussexmidwife I don’t know what the results were just that they were classed as high risk, 1 in 12 chance of baby having DS.

Everything has happened so quickly and the midwife didn’t tell me a break down, maybe I’ll get a letter soon?

I had a dream last night I gave birth to a baby girl, but she was tiny, really tiny then she was gone. Such a weird dream. I’m hoping all this will blow over but I’m not so sure xx

@Sussexbysea it can be so difficult to take in this sort of information. You could ring the midwife and ask her to email you a copy of the results. I am happy to discuss by PM if you wish x

@Sussexmidwife thank you for the offer, think I’ll call them tomorrow and ask for them. I don’t know what relief (if any) they’ll give me but something is better than nothing. What should I be looking for?

@Sussexbysea The combined test takes various things into the calculation (hence “combined” test). These are your age, the NT measurement and the relative levels of the two hormones. It may be helpful for you to understand if it was just the NT level that was a bit unusual that led to the result

They are amazing results!

At 13+5 I had a nuchal measurement of 1.7.
Risk of Down’s syndrome was 1:1730
Risk of E&P was 1:18,000

I’m 35.

@Foreverbaffled did you opt for CVS?

Ummm no? It’s very firmly in the low risk category so didn’t even occur to me. You’ve worried me now ha. Anything better than 1:150 is considered low risk...

Sorry you’re struggling with such a stressful situation though @Sussexbysea and it’s good you’re reaching out for support.

@Foreverbaffled oh I didn’t mean to worry you. Purely a question, that’s all. I’m still trying to get my head around everything. Difficult to do so when you’re in limbo.

Would you mind me asking what the nuchal fluid measurement was?

@Foreverbaffled, sorry just seen it above.x

@Sussexbysea that’s okay! I was just a bit taken aback because the nhs definitely wouldn’t advise a CVS for a screening result like mine.

Anyway it sounds like you’re in a really difficult place and it must all be so confusing. I hope you get answers soon

@Foreverbaffled my NHS Trust said that they’ll only do a CVS if we wanted to terminate the pregnancy, not get a diagnosis.

Our referral hospital in London have said they’ll do it for us if our local hospital say no.

When are you due?xx

@Sussexbysea That's ridiculous that your trust won't do CVS for diagnosis! Even if someone isn't intending to terminate doesn't mean they don't want to know what disability they will be dealing with! And NIPT isn't diagnostic (and in some cases - like mine- fails to get a result at all! You shouldn't have to go private for an invasive procedure in this country if your classed as high risk! x

@JennyMY crazy isn’t it! Yet, we can drive three hours to London and they’ll help us.

@Sussexbysea the national screening programme requires them to offer you an invasive test if you have a high chance combined test. The offer should not be made only if you agree to terminate. Many people are not willing/able to make a decision until the diagnostic result is known. I can give you the reference document if you want.
You might be better having it done by the London team anyway as they will be doing more of them & so likely to be better at it!
With a raised NT the reason for doing an invasive test is to exclude a wide range of conditions. You cannot make a fully informed decision without a result Some people prefer not to do the test, but that is their choice, not the choice of a random healthcare worker.

@Sussexmidwife I totally agree. If the NIPT comes back high risk we’ll go to London for the invasive test, but if it’s low risk, we’ll carry on as normal

Hi, I just wondered how everything turned out for you? We have pretty much the same results I’m just curious! Thank you