Declining antenatal screening tests

[MyBreadIsEggy]

Has anyone else declined antenatal screenings and been treated like a [word removed by MNHQ for being disablist] because of it?!
I declined any screening with DD, and have done so with the pregnancy too. The midwife I spoke to just kept saying "are you sure?", "do you really understand what you're saying no to?", "have you even read the booklet?" etc.
Yes I've read the booklet. Yes I know what I'm saying no to!
We have done our research, and according to everything on the NHS website, we pose a low risk of our baby having a chromosomal disorder (I think it's 1 in 1500 for Down's Syndrome and even less for Edward's Syndrome or Patau Syndrome).
We don't feel the need to know if there were to be anything wrong with our baby. And surely that is a desicion that should be respected by our MW?
I am quite young, and the MW's I saw (except the one that delivered DD) were very patronising throughout the whole process, and from speaking to other young mums that go to the same groups as me, their experiences were quite similar.
I don't want to come across as an arsehole to the MW, but I want her to stop trying to talk me into something I don't want to do!

I am declining the nuchal translucency, and is it called the combined test where they take your blood and test for the risk of Down's Syndrome?? I'll still be having all the blood screenings for infectious diseases, dating scan at 12 weeks and anomaly scan at 20 weeks - that's what I did last time.

The combined test is the nuchal scan and hormone levels from a blood test. Together they give a risk level for trisomies 13, 18 and 21.

It's absolutely your right to decline screening, it's a very personal choice. I'm a midwife sonographer and I also declined it, as do plenty of our patients. The midwife has a legal responsibility to confirm that you have made an informed choice but that's all.

Sorry yes that came out wrong. If you weren't offered any screening other than the nuchal scan I'd be surprised, as you should be offered the blood test (hCG and PAPP-A) which together with the nuchal translucency makes the combined test

Then there's the 20 week anomaly scan which screens for structural anomalies

The combined test is for Edwards and pataus syndrome too not just downs. Edwards and Pataus are considerably more serious than downs.

Sorry kitty cross post!

A blood test was never mentioned to me - excuse my naivety but I wasn't even aware that there was a blood test for Down's and other syndromes.

I didn't understand much of this at the time but it certainly felt like the midwife was recommending I had the dating scan rather than the nuchal.

You can ask to be screened for Edwards and Patau and not for Downs. The latter is compatible with life, the former generally not. Your baby is likely to die in utero, be still born or have a very short life expectancy. So it's not just about deciding whether to terminate or not. You can ask to be selectively screened

www.nhs.uk/conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx

bananafish I have never heard of selective screening? You can ask to be screened just for Edward's and Patau Syndrome?

I also declined the nuchal and blood test. No one ever batted an eyelid

The NHS link I just posted says

You can choose to have screening for:
• all the conditions (Down's, Edwards' and Patau's syndromes)
• Down's syndrome only
• Edwards' and Patau's syndromes only
• none of the conditions

Feck are you in Ireland?

I know the screening process is different there and I'm not sure that you are offered combined screening as terminations are not legal.

And yes, champagne is right, Edwards and patau are much more serious and generally lethal. Usually before birth.

The combined screen looks at the fluid at the back of the babies neck, the free hcg and Papp a in your blood stream to give a relatively accurate risk assessment of the three major trisomies. The blood test in this case does test for trisomies but the three measurements combined give a risk.

There is a nipty (non invasive prenatal test) that is a simple blood test around 10 weeks that then looks at free foetal dna in the mother blood and give a much more accurate assessment of the major trisomies.

I know far too much about this shit!

Yes, It is easy to be screened for t13 and 18 but not 21 as the soft markers in the hormones are different.

You cannot, however, be tested for just T13 or T18 as they both screen similarly on hormone results.

It's completely your choice but not one I can understand. God forbid there was anything that needed intervention wouldn't it be better to have a care plan in place rather than finding out at the birth? Or does it not make much difference? I don't know.

Thanks Kitty! I've got Panorama on Monday eek.

My Dr said they're introducing NIPT onto the NHS if you get a high risk on the combined test to reduce the need for CVS or amnio.

Thanks for the v useful info

Good luck banana.

I think they are hoping to introduce it. It has been piloted but as it is still so new they will not use it as a diagnostic test yet.

As far as I'm aware (I've just had the harmony) if you get a positive screen it is almost certain that the baby has that trisomy but they will not formally diagnose without a cvs or amnio.

The screening itself does not give any certainty, just an estimate of risk. At the end whether your risk is 1 in 5 or 1 in 500 is irelevant if your child is affected.
The only definite way of knowing is invasive testing.
Also DS is not as compatible with life as people assume. 80% of babies with DS are miscarried, stillborn or die shortly after birth.
It is a personal decision.

I was 42 and pregnant with my third child. I declined everything except an US. I was very upfront with my midwife from the beginning about my decision not to accept any testing. She was fine. My pregnancy, labour and delivery were all normal. My dd is a lovely and healthy 8 year old.

Kitty no, I'm in England. Had my baby in 2014 so not long ago.

I'm confused as to why this wasn't explained clearly to me, the midwife basically said 'you can have a nuchal scan or a dating scan but if you choose the nuchal then you don't get a dating scan' to which me and my partner looked at each other like this we chose dating as that seemed to be the norm, and she said that's what she would choose too. She never mentioned a blood test. I did have blood tests for other things which seemed to be routine; sickle cell anaemia carrier etc.

I'm glad I've read this thread now, if I have another DC I will look into the different options properly.

That's what I understood too Kitty

However as you can reduce uncertainty vs the nuchal results (99% accuracy) you should be able to filter out many who would have profiled as high risk on the combined test but whose CVS or amnio would have come back negative, presumably?. If your NIPT shows high risk of the trisomies then the CVS or amnio is just to confirm what you already know, pretty much?

The 12 week scan is usually both dating AND nuchal unless you decline the nuchal part of it. Nuchal has to be done between 11 and 14 weeks so it's only done separately if you're having a scan outside this time (which the 12 week scan generally isn't, to enable the NT to be done at the same time if you so choose)

If your dating scan is after 14 weeks the combined test can't be done and you can only have the quadruple blood test instead

www.nhs.uk/Conditions/pregnancy-and-baby/Pages/dating-scan-ultrasound-10-11-12-13-weeks-pregnant.aspx

We have had all scans, growth scans and abnormality ones etc. so we could be prepared if baby needed extra help or worse.

It was thought that dd had heart problems in the womb, so she was delivered by section with the right professionals standing by for her. Luckily it turned out the problem had resolved itself.

On the other hand we've always declined nuchal scans/ Down syndrome screening as the answer wouldn't have affected our decision either way.

It depends on what you want to know about / prepare for etc.

We declined the nuchal and blood test but had the 20 week scan (and at 37 I was higher risk). I appreciate that for some families that knowing would allow them to prepare but I felt that a positive screen would cause me anxiety for the remainder of my pregnancy. My midwife respected my decision and whilst it was mentioned by the Consultant there was no issue there either.

We are very definite that DS will remain an only but if we were to have another then I suspect I would have the screens second time around (but that's not what you are asking!).