NHS NIPT eligibility after TFMR for T21

[giraffesauce]

Hello,

I’m 36F and 9 weeks pregnant, this is my 3rd pregnancy after a MMC at 10 weeks in 2021 and a TFMR for T21 at 14 weeks in 2022. I haven’t had my booking appointment with the NHS or spoken to a midwife yet in this pregnancy.

Does anyone know if I’m eligible for the NIPT test via the NHS since I had a T21 diagnosis before? In particular I’d like to know if I could have the NIPT before or around the 12 week scan, as opposed to standard pathway (which I understand is NIPT at 16 weeks IF the 12 week screening is high risk).

Bottom line is I’d like to have the NIPT as early as possible, I’m prepared to go private again but would be good to understand if the NHS would offer it.

Hello,

When I had my TFMR for T21 the midwife told me to get in touch with her if I fall pregnant again (I have her phone number to text) and she would ensure I got fast tracked to have the NIPT at 10 weeks (which is the earliest you can do it).

Are you able to get back in touch with anyone who helped with your last pregnancy?

Thank you @hopefuldifferent , now that you mention that I may have been told the same thing. It was over 1.5 years ago though so I don't have any record of the midwife number unfortunately.

I was also told by screening midwives that our NHS Trust now funded women to have NIPT who'd had a previous affected pregnancy (tfmr for t21 also). I fell pregnant quickly again, and was booked to have this at 10 weeks, and the appointment was cancelled on the day as apparently the funding was withdrawn. They apologised and said if I was high risk again (risk rating of 1 in 150 or under) I'd be offered it by NHS following 12week scan. (Thankfully didn't come to this). But simple answer is I think it depends on your funding in your NHS Trust, but likely may not be provided, in which case I'd probs book it privately again.

PS - congrats on your pregnancy and hope all goes well (very likely to!!)

Congrats on your pregnancy! I would ring the EPU and ask them. Very different but I had a previous ectopic and wanted an extra scan very early to check placement and I called EPU before I'd even spoken to my GP or midwife and they couldn't have been more helpful.

Thank you everyone for your input. I managed to speak to the midwives this morning and they told me NIPT isn't currently offered in my case but CVS is, which is pretty backwards (she said so herself on the phone). I think I'm going to do the NIPT privately as I don't want to take the risk with CVS.

Hi guys, for everyone who had t21 diagnosis, did you go on to have a healthy baby? We TFMR in May and I’m now 10 weeks - NIPT results expected next week and I’m just so anxious.

@CSSL7 sorry I can’t advise but just wanted to say you are not alone I am in the same boat. My last pregnancy was t21 and ended in a mmc at almost 11 weeks (got nipt result around same time). I am also very anxious waiting for results. Best of luck with everything

Oh I’m sorry for you too - when are you expecting your results? I’m finding it difficult to imagine ‘low risk’ so I’m just petrified. I was doing ok tbh until I had my bloods taken this morning and now results are imminent I am just so scared for the phone call. Such a dark time I just don’t want to do it again. Don’t feel like I can be happy about this pregnancy until I know.

Hello ladies, I just thought I’d add to this thread to say that I had a TFMR in April 2023 for T21. I then fell pregnant again around the time of my first reply to this thread above - this pregnancy ended in miscarriage at 9 weeks due to triploidy (my 4th miscarraige).

I then found out I was pregnant in May 24. My NHS Trust fast tracked me for an NIPT at 10 weeks which came back low chance for T21, 13 and 18. I’m now 29 weeks and have had a lot of scans which, so far, have all been fine and the baby’s growth is tracking close to the median on growth charts.

I’m still feeling very cautious given my history but thought I’d share my story to hopefully give some tentative hope.

Waiting for the phone call for the NIPT result for this pregnancy was so nerve wracking. I know how you feel.

Thank you so much for the reassurance that a low risk result is possible! 🤞🏼 good luck!!

@CSSL7 next week or early the week after. Oh I know it’s so tough. I actually asked them to phone my dh instead if there is anything and they refused and said they could only call me because I am the patient getting the test. I burst into tears there and then. I’m still so traumatised by the last time.

Supposed to get my result today I could be sick with nerves 😭

@CSSL7 any update ?

Haven’t heard from them. :( I just checked when I had my phone call last time in April and it was 18:51pm!!! Super late!!! I think I might text at 5pm and ask if it’s safe to assume there’s a delay on our results and not to expect them today. I wish they’d actually just told me it takes longer so I didn’t spend my entire day waiting. Do you have any update on yours yet?

No I had mine done last Tuesday and they said it could take up to ten working days ! Hopefully you will get yours soon .

I’ve just text the midwife and it hasn’t even delivered so I feel like she’s finished for the day or off so I’m pretty annoyed. She really shouldn’t have said to expect them today. Going to try and settle for the evening and just expect a reply/call tomorrow.

the anxiety today has been truly debilitating.

i wonder why yours is 10 days. Must be where we live Maybe?

It’s not even 10 days 10 working days so could be two weeks! I don’t live in the uk but where I had it done it has to be sent to the us. Here is hoping I will get it a bit sooner

@CSSL7 just got my results in exactly a week I can’t believe it. Low risk in everything and a little boy! Overjoyed isn’t the word .

We’re low risk too! I feel so relieved I can’t even explain! Congrats! I’m going to have a nap and hopefully wake up and feel human!! I’m feeling all over the place after the results and a good 12 week scan! I feel like I don’t know what to do with myself!

So lovely to read these updates ladies. I hope the rest of your pregnancy goes smoothly.

@CSSL7 that is brilliant news ! Delighted for you too!