Hi everyone, I have hopefully what will be my last appointment at my fertility clinic on Thursday of this week and then they discharge me.
I’m 10 weeks today. I can opt to have the NIPT testing done when I go there, I’m really on the fence and wanted your views please? I think my reservations about it come from the fear of the result!
Firstly, I’m 38 years old. Our embryos weren’t tested (due to low yield each egg collection we just wanted to give each one a chance).
If you had NIPT testing were you pleased you did? I think the NHS do testing too, but it’s not as detailed/accurate, is that right? We aren’t worried about it from a cost perspective as let’s face it, after IVF everything seems cheap 😂 Please let me know your thoughts x
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I think it really comes down to whether the results would make an impact for you, i.e. would you continue with the pregnancy if there was a high risk of a chromosomal disorder.
We went with NIPT, partly because I am really impatient and partly because we had quite strong opinions about the implications of the results.
The NHS do initial tests at the 12 week scan (measurement) and also took some bloods, and then if they look to be high risk you get referred for more detailed tests, so its a multi stage process and takes longer but is obviously free. With NIPT you get everything done in one go.. you can also find out the gender as well which we did.
I think we liked the all in one go and know sooner approach, but like I say if it would make zero difference to you and you would continue with the pregnancy no matter what the result then I am not sure there is a great deal of benefit over waiting for the NHS tests other than knowing the results earlier x
Thanks this insight is really helpful and interesting. We aren’t finding out the gender until we get to the 20 weeks scan as would rather wait, I think my NHS result will come back high right anyway just because of my age alone? Which then could lead to further testing etc anyway x
Yes I guess there is a more generalisation of the initial tests and you would just be lumped into the high category. I guess with the NIPT that wouldn't happen - you don't have to declare your age or any other details as part of that test so you get a truly impartial result which I think is good (the form does ask for it but the nurse told us it was more for the NIPT test company stats rather than the results so we didn't need to complete them - the results are purely done on the bloods) x
Thanks I think I’ll get the test done at my clinic, I’m just avoiding knowing I think as I’m scared of the result and I’m trying to live in a world with this pregnancy where ignorance is bliss, but I guess it’s more healthy physically and mentally to just know if there is anything to know sooner rather than later. Thanks for your advice xx
We did it for our first and not with our second. Unfortunately, I was in the rare minority for whom the test failed more than once. Apparently this can happen with FETs more than with a natural pregnancy. There wasn’t enough fetal DNA in my blood to do the test at 10 weeks, we repeated it a few weeks later and still the same happened. It sent me into a real tailspin and panic and I wished I’d never done it. I had the regular NHS screening and everything came back low risk and my son now 2.5, is absolutely fine. One thing to consider which is what we decided to do with this baby, was that IF my NHS screening had come back with anything <1:1000 risk we would have paid privately for NIPT (and if the risk was much higher the NHS would have offered it to us for free anyway) for extra peace of mind. That’s always an option, you could wait and see what your regular screening comes back with and use that to decide if you want to go the extra step.
(Also to add age alone will not mean your NHS screening will come back high risk. My risk has hardly changed at all between baby 1 and baby despite nearly 3 years between pregnancies)
Thanks for this, do you mind me asking your age please? I think my age is what’s worrying me about the result more than anything. I don’t really know if I want to get into testing tennis with the NHS. Apparently their NIPT testing isn’t as accurate as private ones but I don’t know how true that is! (rumours on Google!) X
I'm 35, I was 32 when I had the tests done for my son. I have a lot of friends who still have had low risk NHS screening results though into their late 30s, early 40s. Age is just one of several factors that feature in the formula that they use. I can't see why NHS NIPT would be any different to private, I'm pretty certain they are all the same test just provided under different brand names just like with drugs which are the same but sold under different brand names i.e. Nurofen is ibuprofen. The advertising is also somewhat misleading, this article describes it well nuffieldbioethics.org/blog/... - ultimately if you get a high risk result the most accurate way of knowing if your baby has got a genetic condition is an amniocentesis. It's a nerve-wracking time either way, you have to do what will give you the best peace of mind but screening tests are not diagnostic, they are there to help you make a decision on what course of action to take next.
Thanks you’re right it’s going to be nerve wracking wether I have it done or not earlier than with NHS or wait for NHS! Waiting for results is never fun let’s face it! X
No they aren’t but it’s overwhelmingly likely that your baby is absolutely fine - of all the odds you’ve faced on your IVF journey this is one that is highly in your favour xx
I'm 40 pregnant with my 3rd. And mine came back with low risk on nhs screening. I trust it because I had the same with my other two children and they are very healthy. I totally agree with Missl73 I would do the same if my NHS 20 week screening came back high risk then that's when I would of gone for further testing.
You are still young when it comes to screening you will be fine.
Hi there, we chose to go with NIPT as it is a more accurate test for most people. If for any reason it doesn’t work or you cannot get a result then you can still have the NHS test any time up until you are 14 weeks and 2 days. Also, the NHS NIPT and private NIPT are the same test to save any confusion there. Our thoughts were, if the nhs could afford to give everyone the NIPT then they probably would and we were in the fortunate position to be able to do it privately. It was a thought though as it is an expensive test. I am the same age as you so had the same concerns around that affecting the result but previous posts here would suggest otherwise.
That’s so true I hadn’t thought of it like that, you’re right the NHS probably would wish they could give it to everyone if that was possible, I’m going to get it done, better to know sooner. Thanks for your advice x
In my area the NHS offer the NIPT to everyone regardless of age. I would check first if it would be offered to you by a midwife before you spend money on a private NIPT as they are exactly the same tests.
Wow that’s amazing they do that! And also really interesting as shows the test is very necessary then! I wish my area did that, unfortunately they don’t! X
I am nearly 15 weeks and paid privately for the NIPT as I wanted early reassurance (with the bonus of finding out gender). Unfortunately for me it has backfired as my first test at 10 weeks 4 days (although measured 11) failed as there wasn’t enough fetal dna in my blood sample which threw me in to a panic. When I went for my nhs 12 week scan they refused to do their combined blood test because I was pending a second re-draw of the private NIPT and they said that was much more accurate than their combined test. My second re-draw (at 12 + 4)has also failed and I now have to wait until I am nearly 17 weeks for a 3rd re-draw with no guarantee that will work either. I have missed out on the nhs combined test and instead of getting early reassurance I have paid over £500 (so far) for 5 weeks of anxiety and panic. I think my case is unusual but I wish I had been told that doing the test at the earliest ie 10 weeks, having a higher bmi (mine is 29) and having had ivf can all be factors in it not working, I have been told a failed test doesn’t indicate a problem with the baby but my mind won’t rest until I get a result and at this rate I’ll be at my 20 week scan before I get it!! Wishing you a smooth process if you go for it, I think for the majority, it does work first time xx
I'm so sorry this happened to you too, it happened to me. I was refunded in full when the 3rd draw also failed so you should be too if they haven't been able to perform the test. My son is now 2.5 and is totally fine but it was stressful and I was so anxious so I know exactly how you might be feeling. Big hugs xx
Oh thank you, it is such a worry especially when you are not prepared that they can fail. I am hoping the 3rd one will work but at same time not overly optimistic! Am glad to hear it turned out well with your son 💖 xx
This sounds so beyond stressful for you, I can imagine how anxious this must make things, it also must be very frustrating! I agree and can see why you just want to know the result now that’s a long time to wait! Wishing you all the best xx
Hi there, I’m sorry this info is a bit late for you but might help others. The NHS cannot refuse to do the 1st trimester Nuchal test. This test can be done any time up until 14+2. Some people choose to have both tests done although there is a risk of conflicting results. You can be advised against having both but they cannot refuse it. Also between 14 +2 and your 20 week scan you should be offered second trimester bloods screening for Down’s syndrome only even if you are waiting for repeat NIPT. I would contact the department to ask about this while you wait. Sorry to hear of your trouble with this.x
Thank you, with hindsight I wish I had pushed it more with the nhs. They took the nuchal fold measurement and I said I wanted the blood screen as well. But when I went along to get bloods taken I was flatly refused because I was doing a private nipt re-draw. I explained my worries that the re-draw may not work and being left with no screening but it was still a firm no and is written in to my maternity notes. I’d have been better off not mentioning the NIPT at all and just asking for the screening as I had assumed I was entitled to it regardless 😏 xx
I’ve had all the tests because I think it’s best to know as much as possible. Fortunately my NIPT was okay. And it was nice to know it’s a girl early doors.
I think it’s quite rare to get a different result at any stage and that’s the thing to try and remember.
And if it was a different result, NIPT is only letting you know a tiny bit earlier As what they test for would get picked up at 12 or 20 week scan.
and meant to add… on age… I’m at UCLH And have so far been low risk on all. They said nowadays they don’t really count age as a factor until 40… or if combined with other things… so I wouldn’t worry to much about being 38 xx
Thanks for both your comments that’s really interesting! Ok I’m going to get it done! Eeeek! Scared lol. But you’re right better to know sooner and peace of mind/be able to make an informed decision x
I’ve had it done in both pregnancies, both from transfers of eggs collected when I was 36. I prefer the NIPT because the NHS combined screening test is quite coarse and misses about 15% of positive Down syndrome cases - I had a high risk result during my first pregnancy (1:50 risk of Down syndrome) so I did a lot of reading on it and realised it really isn’t very good. I declined it in my second pregnancy and went straight for a private NIPT at 9 weeks. The NIPT (if they can get enough fetal DNA) is much better (in my opinion anyway) x
I didn’t realise you can decline the bloods at your 12 weeks scan! Maybe I might do that if I have my NIPT result back in time. I’ve heard from another lady that’s messaged me who is 37 and she had the NHS test come back as 1 in 49 chance and then she had a NIPT done after privately and it came back 1 in 1000! I don’t understand how the results can differ so much when it’s supposedly the same test! Crazy isn’t it x
yes it’s voluntary so you don’t have to have the combined test if you don’t want to. The combined test looks for some markers, like nuchal translucency (thickness on the back of the neck and levels of markers in your blood that are outside certain levels, and calculates them all together to give you a risk, which is obvs not a definitive diagnosis. Problem is that in trying to catch all of the cases of chromosomal abnormalities it tests for it catches an awful lot of cases where everything is absolutely fine too (as well as missing the 15% of DS cases that are actually positive). If you think about it, the sonographers are measuring tiny distances on a grainy image, and whilst of course they are highly trained a slight difference in technique could be the difference between a NT measurement being flagged as abnormal or not. NIPT, on the other hand, whilst also not being diagnostic, has far less margin of error. Sorry for all the detail, I really don’t like the combined test and think the NHS should offer everyone NIPT (they won’t because of cost). Hope that helps and best wishes for whatever you choose to do x
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