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Antenatal tests

Screening test results - feeling upset

11 replies

Lou0808 · 11/09/2019 13:53

We had our 12 week scan and have just received our results in the post from the screening test results.

At the scan the sonographer said the NT was 1.6mm and within normal range.
I felt reassured by this and didn’t feel worried by the screening outcome.

However when we received the letter it’s given me a risk of 1:225 for Down’s syndrome.

I will be 34 when baby is born and my age related risk was 1.517 so obviously I was concerned to see that my individual risk was higher.

The letter said we are classed as low risk, my husband said he was happy with those results, but I personally am so upset.

I’ve spoken to the hospital and they’ve said it’s my bloods that have given me this score.

I really don’t know what to do next.
My husband really doesn’t see any issues which just makes me feel like I’m overreacting.
But after seeing some people with results in the thousands, I can’t help but worry.

I’ve looked into the NIPT Harmony test but hubby said he doesn’t see the point and doesn’t think it will make me feel any better if the results come back the same as the NHS result.

I wouldn’t terminate for Down’s syndrome, but the uncertainty is making me so anxious.
I know NIPT isn’t a diagnosis but from everything I’ve read it’s more accurate.

I know no one can make up my mind, but I’m just hoping to hear from anyone else who May have had results similar to mine and if they did any further testing.

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Hippobag · 11/09/2019 13:59

I've had harmony twice and found the results far more reassuring than the NHS test which I've heard can be wildly inaccurate. If it makes you feel less and anxious I'd go ahead and have the test.

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Lou0808 · 11/09/2019 14:01

I really want to have it done, and hubby said he will support my decision and go ahead with the test. But his worry for me is that they may come back with the same probability and I wouldn’t feel any better for it.
I literally don’t know what to do for the best.
I’m finding it so hard to make this decision.

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HumphreyCobblers · 11/09/2019 14:14

Hello, I think the Harmony test will give you a 99.9 percent definitive answer, not a probability. SO definitely worth having the test.

remember your odds are still very low.

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HumphreyCobblers · 11/09/2019 14:16

The test identifies 99%, but not all, of the fetuses with trisomy 21, 97% of fetuses with trisomy 18 and 92% of fetuses with trisomy 13.

Ok, just been to look.

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kittlesticks · 11/09/2019 14:28

I would have the harmony test 100%. Just for the peace of mind. I think your results are good but the harmony test will improve your odds further. I had the harmony test in this pregnancy and it was so worth it.

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Lou0808 · 11/09/2019 14:29

I was under the impression that the NIPT was still a probability and not a definite answer.
Far as I’ve read only amino and cvs are the only two diagnostic tests. Both of which are invasive and carry risks so I wouldn’t consider at this stage.

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Lou0808 · 11/09/2019 14:30

Did you also have the NHS screening tests and how did your results differ?

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Gilbert82 · 11/09/2019 15:53

The NIPT will give you a ratio which is more accurate than the combined test. Only CVS or amnio are diagnostic tests.
At 1:225 that’s not even 0.5% chance though! Even if you came back as 1:100000 you could still be the 1!
We declined the screening as it wouldn’t have changed anything for us, we had a postnatal diagnosis of Down syndrome. I’m glad I didn’t know during my pregnancy as it would have ruined what was a magical time for us! We would have been fretting and googling everything (you will mostly find outdated and worst case scenarios!). Also any major issues would have been picked up on the 20 week scan (our little one has no medical complications as a result of having DS).
Wishing you all the best for a happy and healthy pregnancy x

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kittlesticks · 11/09/2019 17:00

We had a genetic abnormality with a baby that we lost late into the pregnancy so I since had harmony for both of my DCs. The harmony has always given better statistics to the nhs test. Like 100 times less likely. I have a friend who had a nhs result of 1 in 300 which then came out at 1 in 5000.

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MajorFaffington · 11/09/2019 21:35

You wouldn’t get a result like your NHS result, like 1:225, since the NIPT doesn’t give such a wide variety of results- although the result is sometimes expressed as a ratio, it’s essentially a yes/no answer (although not 100% accurate).

It depends on which test, whether it’s Harmony or another brand of NIPT, but, as I understand it, you will get only either a result like “highly unlikely”/1:10000 or “highly likely”/9:10.

Depending on which test you do, the provider will be able to advise how your results will be expressed.

I had 1:72 on NHS test and “highly unlikely” on the Lucina NIPT.