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Private, NHS or both?

14 replies

Ebeneser · 03/04/2018 13:40

I have had my scan date for the NHS (it's in a couple of weeks time), but my partner and I are seriously considering getting the NIPT test done (which includes scan) privately. Would you go to the NHS scan as well as the private one, or just one or the other? I'm not quite sure what the protocol is, if any, for things like this. I presume both can fill out your notes etc.

At the NHS one they will also be testing for downs (they don't do NIPT), and if that comes back high then I don't want to risk anything like the CVS test. Hence the NIPT. Because of my age I am in the high risk category (and my partner is older than me).

Thanks

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UnderTheF1oorboards · 03/04/2018 19:08

It depends what you want to know really; if you're not bothered about Downs per se you might as well just go with the NHS screening because scans and whatnot will still pick up any serious physical problems such as heart or bowel abnormalities which may or may not be linked to bonus chromosomes. For Down Syndrome or not, the NHS quad test is barely worth the paper it's written on. My chance of having a child with Downs was 0.06% according to the quad test and my DC does have it. The NHS tests also screen for trisomies 13 and 18. However the NIPT will also screen for other chromosomal abnormalities, some of which are not compatible with life.

DairyisClosed · 03/04/2018 19:10

The NHS rather idioticaly often won't accept private scan results and insist on doing their own. I would strongly recommend NIPT. The peace of mind is well worth it.

Ebeneser · 04/04/2018 07:45

Thanks, we’ll go to both then, as I really want the NIPT.

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PrincessConsuelaBannanaHammock · 04/04/2018 07:51

I had the nipt test after a high downs result with my NHS screening. It was offered by the hospital but I still has to pay for it.
The peace of mind I had after the nipt test was worth it, and I wouldn't hesitate to have the test again if I were to have another baby, even if I didn't have a high result with the NHS test.

Ebeneser · 01/05/2018 19:07

So I’ve finally had my NIPT results back (that was a loooong 7 day wait 😂).
T21, T18 & T13 all 1 in 10,000 probability which is the lowest result you can get apparently, so I’m very pleased with that.

The results for the sex chromosome aneuploidy panel came back as inconclusive (it’s for chromosomal abnormalities: XXY, XYY, XXX, XXYY etc). They said I could have a retest but I decided not to. However after googling it I’m now paranoid. Should I have a restest or is it something I shouldn’t bother to worry about? I don’t think it’s anything that the NHS would test for anyway?

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zx91 · 01/05/2018 20:27

Hi ebeneser I am in the same position, got my results yesterday, low risk for all but the sex chromosome aneuploidy panel was inconclusive. They told me they would retest with the second vial of blood they took and I would hear in 3-5days. I'm incredibly worried now and slightly regretting getting the test

TinyTerror1 · 02/05/2018 07:52

This is something the NHS would only test for by doing a CVS or amniocentesis which I know you want to avoid. I would say though that if your baby has a large nuchal translucency measurement at the scan that may be (but is not necessarily) indicative of a chromosomal abnormality. (In my case it measured 3.9 and baby is fine.) If that happens and they call you in for a detailed scan then explain that you've had the NIPT and what they've said. If your NT is fine then I would not worry about it too much. Rereading the above I'm guessing you have already had the NHS scan?

I just found a pdf saying this outcome occurs in 0.5% of cases and explaining possible reasons - www.sonicgenetics.com.au/wp-content/uploads/2016/08/Harmony_NoResultInfo.pdf - although it relates to that specific company, I would imagine the statistics would be similar across the board. Try not to worry too much Smile

Ebeneser · 02/05/2018 09:56

Yes, had the NHS scan, the NT measurement I think was 1.6 or 1.7
I think given the results so far I should stop worrying so much! My 20 week scan is in June, so I’m sure that’s when they may or may not be able to see anything worth worrying about.

Thanks for the link TimyTerror!

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Ebeneser · 02/05/2018 09:57

*TinyTerror even, there really should be an edit post button...

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Coffee3 · 24/05/2018 21:14

Hi Op,

Can I ask if you had the retest done??

I’ve just had the same Harmony results , trisomy results 1:10,000 but inconclusive sex chromosomes. NT was 1.4mm. I didn’t get much advice from the phone call (other than to call the lab which I’ll do tomorrow) and I’m trying to work out what to do.

Thanks!

zx91 · 25/05/2018 18:20

Hi @Coffee3 I'm not the original poster but I did comment on this thread a few posts ago. I got 2inconclusive results then got another blood draw which came back as positive for monosomy x. More than happy to chat by message if you would like to talk.

zx91 · 25/05/2018 18:23

I should add don't panic, inconclusive doesn't mean there is definitely a problem and from my reading it seems the harmony test is far less accurate for sex chromosome aneuplodies. I'd be interested to hear what the lab tell you

MaryShelley1818 · 29/05/2018 12:41

I got inconclusive last year and decided to retest as I was stressed and worried.
It turns out there just wasn’t enough fetal dna in the test sample.
Much relief when the next one showed our little boy x

dancingunicorns123 · 06/06/2018 17:01

I went to both, I'm 27+6 now and have had both nhs and private scans throughout x

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