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Antenatal tests

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Original poster

Anyone who decided not to have the NIPT screening tests?

11 replies

littlegingerone · 12/04/2023 00:24

I've just had a booking in appointment and am just 8 weeks pregnant so far. At my appointment the midwife asked if I'd want the screening tests for DS, Edwards and Pateu. I'm familiar with downs syndrome and don't believe I would want to terminate a pregnancy because of this. The other 2 I'd never heard of before so have been looking into a bit. The way she explained it, if I declined the tests any abnormalities would detected at the growth scan. At the moment I'm feeling inclined to not have screening and wait and see what scans show. Partly because I see from here that the test results often cause a lot of anxiety yet all ends up OK (not in all cases obviously).
I'm just curious to hear why people did or didn't have the screening, their reasons or feelings around it - I guess I'm just checking whether I am being naive or not doing the smart thing by not having them, as they said just to let them know nearer the time of my 12 week scan if I decide I want them. I was trying to avoid any extra possible anxiety around the pregnancy but, am I burying my head in the sand if I don't have them...
Thanks in advance!

OP posts:

underneaththeash · 12/04/2023 00:28

Edwards and Pateu are incomparable with life in many cases, the ‘lucky’ who make it to term have absolutely no quality of life at all. Nothing like Down’s.
you’d want want a termination as soon as possible and they’re easier the earlier you have them.

Saturnsmoon · 12/04/2023 06:19

There’s two types of tests that more or less screen for the same thing (the three syndromes you’ve mentioned). If you are in the UK the most generally accessible test is the combined test which is offered to all women by the NHS. Then there is the NIPT, which in most cases isn’t given on the NHS unless you have a high risk come out of the combined test or are have a past history of a pregnancy with chromosomal abnormalities. The NIPT is considered to be more accurate and so some women choose to go privately to have it if not offered on the NHS.

I opted to have the NIPT and as a result didn’t have the combined test (I’m abroad so this is an unusual situation). I would want screening one way or another because as previous poster mentioned edwards and patau are generally incompatible with life and I would opt for a termination and would prefer it earlier than later if in that awful situation. However I massively regret going for the NIPt and not just doing the combined test, I’ve had two inconclusive NIPT results so far and am currently waiting for the results of the third (used a different company for this one) and honestly the stress and uncertainty it has and still is causing is awful and making me quite ill. Once you’ve had two inconclusive results there is an increased chance of there being an issue with the baby but this is by no means a guarantee. If my third is inconclusive I’m going to face the decision of doing an amnio or not. Apparently the inconclusive results only happen in 2% of the cases so I do think I’ve been very unlucky but knowing what I know now I would have just opted for the combined test at 12 weeks. However I would 100% have wanted some kind of screening and think generally the earlier the better.

backinthefog · 13/04/2023 08:13

There are a number of people who "would definitely not terminate" a pregnancy if they had a positive test for anomalies, including Down's syndrome but then feel very differently when they're faced with a positive test result. It's impossible to know how you'd feel until you're in that position.

Personally, I'd always have testing so that you have all the relevant information. If a test comes back positive and you decide to continue with the pregnancy at least you can make sure you're on the correct care pathway and prepare for the needs of a baby who made need special care.

If you're unsure, perhaps start with the usual NHS screening test and if you get a high risk result you can consider more accurate screening. If you don't then you can move on with your pregnancy without worrying.

turnthebiglightoff · 13/04/2023 08:17

Have the testing. Edward's and Patau's are incompatible with life. I lost an Edward's baby and it broke my heart. Have the tests.

supersonicginandtonic · 13/04/2023 09:11

My sister chose to have a medical termination for her baby when she was diagnosed with Edwards syndrome. It was the right decision for her.
I also know somebody who chose to carry on with her pregnancy for Edwards syndrome and she got two days with her baby. That's was the right decision for her.
Some children with Edwards syndrome do survive longer. Nobody on here can say what the right decision for you and your family would be, only you know that.
I didn't have the tests with my older two children but I did with my youngest two as I was much older. The choice is entirely yours and yours only, please do not feel any pressure from others. Just listen to professional advice and make the decisions yourself.

Original poster

littlegingerone · 13/04/2023 11:23

Thanks very much everyone for taking the time to reply, and for sharing your experiences. it's been really useful for me to think about it from all angles and see all the different perspectives

OP posts:

MrsHolder09 · 22/07/2023 13:28

@littlegingerone I'm in the same position as you had my booking appointment on Thursday and now trying to decide the same - it's really hard isn't it. 😊

COS2102 · 25/07/2023 08:40

I have always said no thank you to the test. Decided I didn't want it then didn't look into it any further because I didn't want to feel conflicted and just wanted to deal with any consequences I came across. If that's naive then so be it but it is there as a choice for a reason, for us to choose what is right for us.

StampOnTheGround · 25/07/2023 21:48

I was unsure at my midwife appointment and decided to have it when it came to the day of my scan.

I wouldn't have terminated a Down's syndrome baby, which is why I was on the fence. However, knowing Edwards'/Patau's syndrome would mean having to have a TFMR made me decide to have it.

I wouldn't have wanted to find that out as far along as 20 weeks.

Whatever you decide will be what's right for you 😊

jellybe · 25/07/2023 22:02

I personally never had the test (was only for Down syndrome when I had my kids). As I wouldn't have terminated for DS. If was to become pregnant again now I would only want screening for the other two as they aren't compatible with life and I would want to terminate then and the earlier the better if that makes sense. (Not sure if that is an option or not)

Diversion · 25/07/2023 22:13

Although there were obviously tests in 1997, I do not believe that the NIPT was available back then. When my scan showed concerns at 18 weeks I was given lots of blood tests, given internal scans and offered amnio as issues likely to be Edwards were suspected. We were also offered termination. After much heart searching we decided against the amnio and termination and decided to let nature take its course. Very luckily for us our daughter was born healthy but then suspected to have Downs at 3 months. Tests for this were negative too. She is now a happy and healthy 25 year old but things could have very easily been different. I made my choices and completely accept the choices of others. Thinking of those whose outcomes were not as positive as ours.

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