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Antenatal tests

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Original poster

NIPT test

15 replies

Deeps123 · 07/09/2021 22:44

Hi im 16 weeks pregnant and i have low papp-a (0.28). And down syndrome risk 1 / 123. I did nhs NIPT test twise and failed. ( they couldnt find chromosome and get any result). I dont want to go for amnio test. Please can anyone tell me if its worth doing private. Im So stressed and helpless. If anyone had similar experience please advice me what to do. Thanks

OP posts:

Elouera · 07/09/2021 22:51

I'm sorry you are going through this. When I had the NIPT, they did say that in some cases, it can't pick up enough foetal DNA- more common if you have a higher BMI.

What was the NT? Were there any concerns on the scans? Have you discussed with them what your concerns with having the amnio are? Was amnio your only option discussed?

Original poster

Deeps123 · 08/09/2021 10:30

Thanks so much for your reply. My NT was 1.4 at 3 months scan. They said its normal. The only concern was my age (im 41) and i had ivf transfer, i think it affected low papp-a. They offered me ambio test. Thats something we dont want to do. Or a detailed scan at 5 months, but it doesn't guarantee any diagnosis. Im thinking of doing a private NIPT. But i dont know much about it.

OP posts:

Sophfr17 · 09/09/2021 22:30

Hi @Deeps123
I am 18 week pregnant with identical twins after IVF (PGS tested embryo, thus low risk of trisomies). NT was low for both babies, but risk was 1/180, cause 39 years old. Although doc said he wasn't worried, I did the NIPT test privately. I chose the SAFE test, result came back in 4 days, with risks lower than 1/100000 for all trisomies. I knew it, but I had to be sure^^ if you feel like you want to do it, just do it. In the clinic I chose (PM me for details), I said I just needed the blood test, not the scan and they agreed on blood only.
Take care
S.

SCJ1990 · 23/09/2021 23:58

Hey.
Just wanted to share my story, as I found this forum really helpful whilst I was waiting for my NIPT results.
I hope my experience can help any parents going through this, and give them a glimmer of hope.
Im 31, and currently pregnant with my second child. I didnt have my first scan and blood tests until I was 17 weeks.
With my first pregnancy we had the genetics screening (downs syndrome, edwards and pataus) , which came back low risk. We simply got a letter stating 1 in 10,000 etc.
With my current pregnancy we were told if its high risk its a phone call, low risk its a letter- So when we had the phone call with this pregnancy my heart just sunk.
My first son has autism, and needs alot of attention - Everyones circumstances are different, but having two children with special needs is something I knew I couldnt cope with.
Downs syndrome isnt just a learning disability, it can have physical/health complications aswell.
Our first NHS screening was explained as just an algorithm, but still very worrying considering my age.
After much consideration we opted for the NIPT, instead of the amnio. The midwife really talked us out of having the amnio, stating the NIPT is just as effective.
Happy to report we came back low risk.
We still have the 20 week scan to go, but fingers crossed baby is happy and healthy.
The 8 working day wait for NIPT results was excruciating, and I was a ball of emotions.
I automatically assumed the worst, and just cried everyday.
Reading everyones experiences on here really gave me hope, when I allowed myself to believe.
I hope my blog does the same.
Peace and love to all.

Moominmiss · 27/09/2021 12:52

I have just had my baby at age 39 so knew my risks were higher.

I opted out of the standard nhs screening and instead paid privately to have the SAFE nipt carried out.

The SAFE test is slightly different to the harmony/panorama tests etc, because while they need 4% of Fetal free dna in your blood sample, the SAFE test only requires 2% Fetal dna.

The experience I had was fantastic. The scan they did was far more detailed and thorough than any nhs scan I’ve ever had, the staff were lovely, and I received my results exactly 7 days later. I received the lowest risk score possible of 1:100,000 for all trisomies.

Had I gone with nhs screening my results would have put me at high risk based on my age alone.

My baby was born a few weeks ago perfectly healthy.

MummytoAda · 19/02/2022 05:00

Hi all
I wanted to add my screening and NIPT experience in the hope it may help someone else who is, like I was last year frantically searching for other similar stories.
After 3 years of ICSI treatment, we were delighted to discover we were pregnant and started to tell people as soon as we had the 12 week scan image in our hands. Within days we were told we had 1:5 chance of DS. This was due to high Hcg (apologies can't remember the figure) my age (36) and a low Papp-a of 0.15.
After discussing next steps we opted for the NIPT, as provided by the hospital, my OH was against having the amnio due to the (albeit very very small) chance of miscarriage.
We had the NIPT and got the results within a week. All they said were "lower risk" with no ratio figure as I think this is only provided with the privately paid for tests.
Not having a more concrete "1:10,000" figure to focus on I spent my entire pregnancy a nervous wreck and these results never left my mind. We had our baby 2 days ago and she was born with no signs of DS.
Having spoken to a number of different people throughout my pregnancy I know the screening is purely a number of factors that can potentially 'indicate' your baby has something when all plotted together but they are absolutely not diagnostic and so please do remember that although a 1:5 is terrifying it isn't accurate.
I won't divulge if we would have aborted or not. I think that decision is entirely yours to make, judgement free. I just wanted to share a 1:5 that wasn't DS upon birth to hopefully reassure someone out there!

Minimossy159 · 02/03/2022 14:49

@MummytoAda thank you, that’s very reassuring. In the same boat, just have my NIPT on the nhs today and felt like the result, even if it was low risk wouldn’t settle us so we’ve opted for private as well. Please wish us luck, are private test is tomorrow x

Aks96 · 13/04/2022 13:26

Hi,

Just wanted to share our experience and hopefully can reassure other mums and dads. My partner was told after her NIPT test that our baby would have greater than 1/5 chance of having DS - we opted to not having the invasive procedure despite being encouraged by the doctors as some sort of science experiment.

I hope anyone that goes through experience can remain strong as we had to go through this bad experience from 10-12 weeks onwards which was traumatic as first time parents.

Our baby boy was born healthy with no DS issues.

1990s · 13/04/2022 13:30

For balance, I had a risk of 1/27 of a genetic abnormality. Everything looked fine on the scans, further testing showed the baby did have the abnormality.

I think what tests you have and what you take from them depends on what decision you make as a result.

CameraCoffeeCrochet · 16/04/2022 08:57

I do think it's important to know that the Nipt test whether private or NHS is just a screening tool and is NOT diagnostic!

I was given a 1:3 chance of Edwards/Patau, failed 2 Nipt tests then had to have an amnio which diagnosed our result officially. This resulted in our much wanted pregnancy ending in tfmr. 💔

isitbedyet · 16/04/2022 09:02

If it helps
My SIL when pregnant with my nephew was told he was downs, did all the tests and they was certain so they was expecting my nephew to have downs

I didnt know at the time as I was only young but everyone was crying their eyes out when he was born- simply because their isn't anything wrong with him and he hasn't got downs he's now 15 with a girlfriend living a normal teenage life

MummytoAda · 16/04/2022 09:25

So sorry to hear this. Sending love your way x

Merryclaire · 18/04/2022 07:34

As I’m 40 this year, I decided to pay for a Panorama test even though the nhs combined test came back low risk.
I even went for the extra panel which tests for more conditions (though this was more expensive).
Everything came back low risk, which was hugely reassuring.
The thing to bear in mind with nipt tests is that false negatives are rare, but if you come back high risk it doesn’t necessarily mean the worst - you would need aminocentesis to confirm. Some of the conditions nipt tests check have a margin of error, so can produce a high risk, but even so it might be 1 in 10, meaning the baby is still most likely unaffected. Others are more accurate (never absolutely 100% certain - but as close as you can get).
I think nipt tests are hugely reassuring if you’re worried (particularly about DS) but you have to go into it with open eyes as they aren’t 100%, and can (albeit only occasionally) throw up false positives that lead to a lot of worry and invasive testing. If you can accept that is a possibility and can afford to do it, then go for it.

SunnySideDownUp · 18/04/2022 12:57

Sorry to hear you've had two failed NIPT tests. If you can afford it, maybe try another one privately.

My youngest has DS - her NIPT results came back positive at about 23 weeks. I remember feeling devastated, but she's incredible.

Heartbrokensosad · 11/04/2023 15:31

Hi I am 20 weeks pregnant and recently got my NIPT results and it’s showing high for downs and edwards. I’m 39 so she isn’t on my side. I’m so devastated. I am getting a cvs done on thursday. Has anyone my age had high NIpt and then gone on to have a healthy baby?

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