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Nuchal scan/ blood results came back high risk

20 replies

Worried1994 · 05/01/2022 23:13

Hi,
I had a Nuchal scan and bloods around 13 weeks. When we were in the scan they said everything looked all good with the baby but the bloods have given us a 1:186 chance of downsydrome. I am really worried as I wasn’t expecting this as we had the NIPT test at 10 weeks and everything came back fine!

We are waiting for a referral to see a specialist. Just feeling really worried!

OP posts:
YesitsBess · 05/01/2022 23:16

I have nothing useful to add here but to say I'm thinking of you and I hope everything works out, however that unfolds.

NewPositiveYear · 05/01/2022 23:32

My friend was 1:50 and her baby doesn't have downs. There are many factors

Redlorryyellowlorryblue · 05/01/2022 23:34

When I was pregnant I paid to have the NIPT as I believed that it was more accurate than the standard bloods.

www.nhsinform.scot/healthy-living/screening/pregnancy/non-invasive-prenatal-testing-nipt

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freshflowers2 · 05/01/2022 23:35

If the NIPT has come back as low risk (usually 1/10,000?) for Down's syndrome then please don't worry. It is more accurate for detecting trisomies than the NHS bloods tests they do at this stage.

Lotsalotsagiggles · 05/01/2022 23:37

Mine was 1 in 33 and came back all clear

Totalwasteofpaper · 05/01/2022 23:48

I didn't think this was particularly high... mine was 1 in 212 or so which I thought was pretty good given my age

What is your nuchal fold measurement mine was 2.4m so I wasn't really concerned amd didn't do nipt

Worried1994 · 06/01/2022 00:03

I am 27 so I think that is why they said it is high risk. I don’t have the measurements on me at the moment but the doctor said all the measurements were all good. My risk went up due to the blood test results

OP posts:
Worried1994 · 06/01/2022 02:42

That’s comforting to hear! Thank you. Glad everything came back clear

OP posts:
Worried1994 · 06/01/2022 05:52

My NIPT print I got from my GP doesn’t seem to have the odds written on it, it has just got ‘no aneuploidy detected’ does yours have PDFs written on it like 1:1000?

OP posts:
EishetChayil · 06/01/2022 07:34

@Worried1994

I am 27 so I think that is why they said it is high risk. I don’t have the measurements on me at the moment but the doctor said all the measurements were all good. My risk went up due to the blood test results
At 27 your age won't be a risk factor.
Worried1994 · 06/01/2022 08:40

Apologies, I meant that I was at a risk because I am only 27 and had 1 in 186.

OP posts:
Wolowl · 06/01/2022 10:34

I had mine this week too and it came back as a 1 in 59 chance. I had a CVS yesterday and just waiting on the results. The information and care we got was really great, and very quick - scan was on Tuesday- so hope you know more soon.

Worried1994 · 06/01/2022 10:49

Hope everything goes well for you

The waiting is the worst part, I had my scan and got the results a week later, booked with the specialist Monday to get some more information

OP posts:
aNewYorkerInLondon · 06/01/2022 11:19

NIPT, while still being only a screening, not a diagnostic, has fewer false positives than the Nuchal test.

The woman who did my blood draw and sonogram for our NIPT was actually one of the people on the panel that recommended the Nuchal test to the NHS back in the late 90s/early 00s. At that time, they recommended ten measurements be used in the scan, but the NHS only uses three of them. This became fairly standard in the early 2000s.

She said she'd like to see NIPT completely replace the Nuchal because it is more accurate switch fewer false positives and far fewer false negatives than the Nuchal.

Both tests are only screenings though. Amniocentesis and CVS are the only diagnostic tests that can give certainty, though they carry risk.

Nuchal and NIPT are meant to be used to help us decide whether to do an amniocentesis.

The woman I mentioned above said that NIPT is often the next step AFTER an at-risk Nuchal test result, and she even encouraged me to only do the NIPT to avoid the anxiety that mixed results can create.

Only you can know if you are comfortable going by the NIPT probabilities or if you wish to proceed with an amnio/CVS.

It may be down to whether doing the amnio would affect your decisions or not. There is no right answer here.

I'm sorry that you're faced with this decision and I'm sending you hugs and support. 🌻

Sapphire387 · 06/01/2022 11:22

I know it sounds high, and I don't want to downplay your fears, but also... try to remember there is a 185/186 chance of your baby NOT having Down's Syndrome. Sending a handhold though, hope all goes well with the next steps Flowers

Worried1994 · 09/01/2022 07:43

Thank you for posting! We have our specialist appointment tomorrow so we will see how that goes. Still feeling very conflicted having one high risk and one low risk so we may do the amino

OP posts:
PartySuziPlease · 09/01/2022 08:22

I was in a similar situation to you at 27 years old with my daughter. My stats were 1:7 for down syndrome and, like you, it was due to my blood results. She turned out to be perfectly healthy after cvs and several scans. We did genetic testing and everything was normal. The advice from consultant was that some women's bloods do go very wonky in pregnancy. Have you had a bleed? I had a bleed abd they said that it would have contributed, also the fact i was having a girl. You have my every sympathy, waiting for results is horrendous. Sending hugs x

Worried1994 · 21/07/2022 03:27

This reply has been withdrawn

Withdrawn at poster's request

BalloonsAndWhistles · 21/07/2022 06:11

What great news, congratulations 🎊 👏

ElsaMars · 21/07/2022 07:25

Mine was 1 in 15, I was offered and refused an amnio as I'd had a previous miscarriage but I had the blood test. It was one of the most stressful weeks of my life, so I really feel for you. I began to doubt my prior beliefs (not on termination but on having a downs baby) having worked with downs adults I said I would be OK with it but my feelings at that time, in reality were different. It ended up coming back 1 in a million and she's a fine and dandy 4 year old - apart from the sickness bug she has today. If the NIPT was fine, aren't those the most accurate results?

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