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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Is everyone offered a NIPT test

23 replies

CoconutGirI · 29/02/2024 12:58

38 expecting my first baby.
I had my booking appointment on 30th Dec and my first scan 9th Jan when I'd just turned 13 weeks.
It seems like everyone was offered the NIPT testing and I'm wondering if this is standard will all nhs maternity?
It kinda bothers me that I didn't receive the blood test especially since I'm of a more advanced age and certain conditions are more likely

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Isitisit · 29/02/2024 13:01

No it’s not. You are offered it if combined testing shows you as higher risk. If you haven’t been offered it then even with your higher age (which is factored into the testing) you have come out as low risk.

CoconutGirI · 29/02/2024 13:05

What is the combined testing? I have numberous factors on my notes which have listed me as higher risk and I'm under consultant led care due to this

OP posts:
ColleenDonaghy · 29/02/2024 13:06

Where are you based? There's much less testing at the booking scan in NI than in the rest of the UK.

SlowlyLurking · 29/02/2024 13:11

The combined test is a blood test you'll have had to consent to that's usually done during your dating scan. It tests for high risk markers of chromosomal abnormalities in the fetus and if those come back with high risk numbers you'll be offered the NIPT.

You can always pay £400 for one privately.

AimeeLou84 · 29/02/2024 13:21

@CoconutGirI Hey. I’m 39 expecting my first baby (I’m also consultant led) and was noted as high risk due to my age. I originally had bloods take (quad test) which took my risk down to 1 in 137 but before that it was 1 in 133 for my age alone. Anyone over 1 in 150 doesn’t get offered the NIPT.
You should have been offered quad test due to age? They then get the risk factor from this.

Mrsttcno1 · 29/02/2024 15:39

I think you might be getting the NIPT mixed up with just the typical combined screening which is typically done at 12 weeks. When you have your dating scan, if you consent to the testing, the sonographer measures the babies nuchal fold and immediately after the scan you have a blood test done, these results combined with factors such as your age & family history generate a “chance” result e.g. 1 in 100. If your risk is 1 in 150 or higher THEN the NHS will offer further testing x

Scalby · 29/02/2024 15:48

I went through hell after mine threw up an anomaly. DS is 20 now (and healthy). I might not remember every detail but it strongly suggested a Neural Tube Defect and the baby's liver was producing a chemical indicative of certan cancers. It was one thing after another right up until birth. To add to it all my dad died around the time he was conceived. It was awful.
DS was very longed for (10 year gap) between him and DC1, and we knew we were not terminating the pregnancy, so I wish we'd never gone ahead. I thought it was routine.

Tianrose · 29/02/2024 21:27

No you’ll only be offered the NIPT if your combined screening test returns a result of them thinking you have more than a 1:150 chance of baby being affected by Downs, Edward’s, pataus, otherwise if you want the test you have to pay to have it done privately, usually about £300

Lj8893 · 29/02/2024 21:36

The NIPT isn’t offered as standard in the NHS.

When you had your booking appointment you should have been offered combined screening (they may not have called it this) as part of your first scan. This screening is for Downs, Edwards and Pataus syndromes and involves a measurement on the scan and a blood test following the scan. This then gives you a chance factor, anything above 1:150 is classed as low chance and so further diagnostic testing (such as NIPT) isn’t offered. If your screening is higher chance then further diagnostic testing is offered such as NIPT.

SH998 · 29/02/2024 22:42

I was late having my 12 weeks scan, had it when baby measured 12+5 and as he wasn’t in the correct position they couldn’t get the relevant measurements and the deadline has passed so they suggested a private NIPT test if I was concerned. Being 40 and an IVF pregnancy I cried all the way home.
We managed to find a private clinic as it wasn’t offered on the NHS but on arrival at the clinic they advised they didn’t have the relevant tests in stock, we left and again I cried all the way home. We didn’t opt for another NIPT.
I was given a QUAD test at 16 weeks which came back low risk. As I understand the NHS wouldnt offer an NIPT test unless the tests come back high risk.
Good luck.

CoconutGirI · 29/02/2024 23:22

Oh I see, yes I think I may be confusing nipt with a screening test then.
I wasn't offered any screening test either to test for any syndromes.
I had bloods at my booking only to test for blood sugars , hiv hep ect

OP posts:
ColleenDonaghy · 29/02/2024 23:33

Where are you based?

Lj8893 · 01/03/2024 06:37

CoconutGirI · 29/02/2024 23:22

Oh I see, yes I think I may be confusing nipt with a screening test then.
I wasn't offered any screening test either to test for any syndromes.
I had bloods at my booking only to test for blood sugars , hiv hep ect

I would definitely bring this up with your maternity service as it is Uk national standards to offer this screening as standard.

https://www.nhs.uk/pregnancy/your-pregnancy-care/screening-tests/

nhs.uk

Screening tests in pregnancy

Find out about screening tests in pregnancy. These include ultrasound scans and blood tests to try to find any health conditions that could affect you or your baby.

https://www.nhs.uk/pregnancy/your-pregnancy-care/screening-tests/

ColleenDonaghy · 01/03/2024 07:20

Lj8893 · 01/03/2024 06:37

I would definitely bring this up with your maternity service as it is Uk national standards to offer this screening as standard.

https://www.nhs.uk/pregnancy/your-pregnancy-care/screening-tests/

It isn't offered at all on the NHS in Northern Ireland. You can get the blood test on request, but they don't exactly broadcast that, and they don't measure the nuchal fold. The 12 week scan is purely a dating scan.

AllThePotatoesAreSinging · 01/03/2024 07:37

I wasn’t offered it, I had it and paid for it. I was under a recurrent miscarriage clinic from my late 30s and they recommended it as more reliable than the NHS triple test for women my age. First time they did it (I had to pay private cost but it was subsidised and done at the hospital. Second time they weren’t doing that trial any more so I paid for it at a local private clinic. Worth every penny for peace of mind

Tianrose · 01/03/2024 10:27

CoconutGirI · 29/02/2024 23:22

Oh I see, yes I think I may be confusing nipt with a screening test then.
I wasn't offered any screening test either to test for any syndromes.
I had bloods at my booking only to test for blood sugars , hiv hep ect

Are you sure you had a test for blood sugars, this isn’t part of the routine tests, however during covid some trusts did a test for blood sugars at booking for women at risk of gestational diabetes instead if the usual test they do for these women later in pregnancy. Otherwise blood sugars may be done if you had glucose in your urine but it isn’t part of the standard screening tests.
The standard screening tests taken (if consented by woman) at booking in England for all women are
Full blood count - looks at Hb (potential anaemia)

  • white cell count - can indicate infection
  • platelets - potential clotting problems indication as to whether you might be a carrier for the gene for sickle cell or thalassaemia (combined with ethnicity)

Blood group and blood cell antibodies

Hepatitis B
HIV
Syphillis

Offer of combined screening test to give indication of risk is Down’s syndrome, Edward’s and Patau’s syndrome - involving measurement of back or baby’s neck on scan (nuchal fold) and blood test after the scan - can only be undertaken if measurements correlate with baby being between 11-14 weeks gestation at the scan, if baby found to be smaller then booked another scan and if bigger offered the quad blood test (just for Down’s) after 16 weeks

of risk comes back as more that 1:150 then NIPT blood test offered which gives a 70-90+%accuracy of whether baby affected by Edward’s, Patau’s or Downs (can have this test done privately from 10 weeks)
Alternatively will be offered opportunity to go straight for CVS/amnio which will tell you with 99.9% certainty if baby affected but does carry a small risk of miscarriage as obviously invasive test

Usually also MSU Culture in lab - to check for urinary tract infection

The vast majority of women usually consent to all the usual screening so would be unusual for it not to be documented somewhere if the midwife had understood you had declined the test. I would of also thought they would of just confirmed with you at the scan also that you had declined the combined screening if that was there understanding so would usually be picked up then if the midwife had forgotten to mention it at booking

CoconutGirI · 01/03/2024 12:57

Tianrose · 01/03/2024 10:27

Are you sure you had a test for blood sugars, this isn’t part of the routine tests, however during covid some trusts did a test for blood sugars at booking for women at risk of gestational diabetes instead if the usual test they do for these women later in pregnancy. Otherwise blood sugars may be done if you had glucose in your urine but it isn’t part of the standard screening tests.
The standard screening tests taken (if consented by woman) at booking in England for all women are
Full blood count - looks at Hb (potential anaemia)

  • white cell count - can indicate infection
  • platelets - potential clotting problems indication as to whether you might be a carrier for the gene for sickle cell or thalassaemia (combined with ethnicity)

Blood group and blood cell antibodies

Hepatitis B
HIV
Syphillis

Offer of combined screening test to give indication of risk is Down’s syndrome, Edward’s and Patau’s syndrome - involving measurement of back or baby’s neck on scan (nuchal fold) and blood test after the scan - can only be undertaken if measurements correlate with baby being between 11-14 weeks gestation at the scan, if baby found to be smaller then booked another scan and if bigger offered the quad blood test (just for Down’s) after 16 weeks

of risk comes back as more that 1:150 then NIPT blood test offered which gives a 70-90+%accuracy of whether baby affected by Edward’s, Patau’s or Downs (can have this test done privately from 10 weeks)
Alternatively will be offered opportunity to go straight for CVS/amnio which will tell you with 99.9% certainty if baby affected but does carry a small risk of miscarriage as obviously invasive test

Usually also MSU Culture in lab - to check for urinary tract infection

The vast majority of women usually consent to all the usual screening so would be unusual for it not to be documented somewhere if the midwife had understood you had declined the test. I would of also thought they would of just confirmed with you at the scan also that you had declined the combined screening if that was there understanding so would usually be picked up then if the midwife had forgotten to mention it at booking

Hi, yes I had a blood test for my glucose as i have pcos and I'm on metformin already and was previously diagnosed as pre diabetic.
No , no screen bloods were offered.
I'm in n.i and as another poster mentioned , I don't think it's routinely offered to all women. I thought it would be as I know women who had the test but clearly that's not the case

OP posts:
ColleenDonaghy · 01/03/2024 13:00

I knew you'd be in NI. I think the knowledge is very patchy here. I asked for the quad test (think that's what it's called, sorry, memory is foggy) at the Ulster first time around at 34. They gave it without hesitation but I had to ask. Second time I was 36 and I thought I'd be offered, friends were, but I had to ask again and this time had a call from a midwife about what the test could show and the next steps if the result wasn't low risk etc. The next steps would have included a referral to feotal medicine and the NIPT at that stage.

Mrsttcno1 · 01/03/2024 13:00

Ah I see it must be different there. You may be able to have an NIPT done privately now if you’d like that for peace of mind? I’m surprised it’s not routine in NI as it is elsewhere in the UK

Lj8893 · 01/03/2024 17:00

Ah I had no idea it wasn’t part of the national screening programme in NI. Apologies!

allgrownupnow · 01/03/2024 17:28

My understanding, I could be wrong, is that this screening wansnt routinely offered in NI because if something shows up the option in the rest of the UK is then for the parents to decide whether to terminate the pregnancy.
As abortion isn't as available in NI, the screening isn't done as there is nothing to be done about the result as it were.
Another reason that the religious hold over NI politics is so problematic.
Abortion became legally available in 2020, but seems the maternity systems haven't caught up yet.

allgrownupnow · 01/03/2024 17:30

Meant to say 'wasn't' rather than "isn't" available- on the app so can't edit

Tianrose · 01/03/2024 20:02

CoconutGirI · 01/03/2024 12:57

Hi, yes I had a blood test for my glucose as i have pcos and I'm on metformin already and was previously diagnosed as pre diabetic.
No , no screen bloods were offered.
I'm in n.i and as another poster mentioned , I don't think it's routinely offered to all women. I thought it would be as I know women who had the test but clearly that's not the case

That makes sense with the blood sugar, yes so many things slightly different between England & Wales, Scotland and NI

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