Over 40 & NIPT scheduled for Monday - the waiting game

[LittleLifeGuardian]

Hello everyone,

I was 41yrs old a couple of weeks ago, and am just past my first scan and trimester. Hit with the news yesterday that I am 1/37 risk of Downs with my baby. It’s my first ever pregnancy so I am really spiralling. NIPT booked for Monday, but results will be another 10 days after that.

How do you keep positive when your future as a mother has been shrouded in darkness all of a sudden?

I’ve been over researching of course, and am aware that people go on to have low risk results, and healthy pregnancies, but some get to their 20wk scan and see abnormalities in development.

any input welcome..

Hi @LittleLifeGuardian sorry you are going through this. Have you had any markers showing on a scan?
Not had the same thing as you as such but i had a pregnancy last year where the egg was fertilised twice and it had 69 chromosomes instead of 46. It was a terrible time and such a huge shock. When I fell pregnant this time I had a NIPT at 11 weeks and the time waiting was soul destroying. I am now 22 weeks and everything is looking good so far.

Your chances of having a baby with DS is still quite slim, especially if it’s only based on your screening results and nothing else! X

Dearest @BabyBorn - thank you so much for being the first person to connect with me, I’ve not been on here before and I see that it’s such a valuable platform for support. Your words were a comfort. I’m so deeply sorry that you endured such a horrific experience last year, and what a huge congratulations to have a peaceful time with this current pregnancy. Women are SO strong!

The nurse doing our ultrasound at 12wks said that everything looked healthy, and so we were shocked by the high risk result from that initial blood test, when I spoke to the midwife yesterday she just said I’m older and have low protein that’s the only markers for the risk..she didn’t say anything was found on the scan to corroborate, so I hope that’s the case.

As you will know, having your motherhood future shrouded in darkness from one day to the next is a huge shock, and the waiting is unbearable..

Got to hold onto positive thinking right? Or else all the worry would’ve been for nothing. Easier said than done! What helped you to keep your mind focused?

lots of love

Hello

Just wanted to say I've been in a really similar position. First baby at 38 after a long time TTC. Our risk came back 1 in 5 for T13/18 and 1 in 8 for T21. However, our 12 week scan showed straight away that baby was very poorly and unlikely to make it as there was so much fluid on the neck (the NT measurement). I hope that as you had a positive scan, everything goes well for you.

Our NT measurement was 8mm, and NIPT came back high risk for T18. Sadly we went on to have a TFMR but 13 months later we welcomed a healthy baby just days before my 40th.

Come back and let us know x

@MrsScotlandthank you so much for sharing your heart wrenching story. I am so deeply sorry to hear that you endured such stress and upset, and can’t even begin to imagine what you have been through. Women are so strong! I really hope that the nurses, midwives and staff were all compassionate and supportive to you. Having statistics and measurements is intimidating in itself let alone getting the bad news.

I really hope that you find peace on your healing path, sending so much love.

We had our NIPT tests today and the midwife was an angel, the whole process we felt so supported and held, no matter what the outcome, though she was quietly optimistic so that’s given us strangers and hope..some things are just a lesson in surrender and release, and things we cannot control. It’s such a brutal lesson.

Big hugs xx

Morning

I keep thinking of you and wondering how you are, I hope you get your results very soon x

@MrsScotlandthank you so much for thinking of us! We are still twiddling our thumbs and waiting for our results, a week has gone by and I've had brave days and not so brave days! Hopefully we’ll hear soon and it’ll be a successful and optimistic story.

Hugs and thanks

How are you doing? Xx

I saw your thread @LittleLifeGuardian and I just wanted to say I totally understand how awful the wait is! I am currently waiting for NIPT results too (for DS and E/P after flagging higher risk) and it feels all-consuming. Should it be of any help, I was high risk for DS for a previous pregnancy (1 in 86) but the NIPT came back low chance in that pregnancy and I found I was able to relax and focus on the baby after that. It is very easy to feel like all hope is lost after the screening test, but it is statistics and not diagnostic (as you’ll know).

I hope you get your results soon ❤️

@Lemondolphinthank you ever so much for getting in contact with your encouraging words! I’m so sorry that you understand the endurance of The Wait, and of how upsetting it can be to be told on the first bloods that something life changing “might” happen..I’m glad you got a low risk NIPT result! We are on 7 days wait and hope to hear before 10 days..I truly hope so, as the “what if” list really grips your emotions. Must stay optimistic and positive, know that with the support of the NHS and family I can get through any outcome and truly believe in that. Our midwife said she was on a focus group protesting how inaccurate blood work factors can be using the computer algorithm that assesses the potential risks..and how she wished there was more funding for nipt for everyone at the get go, but the labs are up in Dundee (we’re in Glasgow) so costs more and has to be sent away. Power to you xxx

Hi @LittleLifeGuardian , thanks for your reply! The Wait is very difficult, especially after waiting for so long to get to the twelve week scan! I am in Edinburgh and my NIPT test (the one I’m waiting for) is being run in Dundee too. That is interesting your midwife has mentioned about the potential inaccuracy of bloodwork factors in the algorithm for the screening tests (we think low paap- a/ protein is one of the reasons for this NIPT test being needed.) Hopefully we hear something this week and have reassuring outcomes x x

@Lemondolphinlovely to talk to you and to know you’re in our neighbouring city going through the same Dundee lab! I had low protein in my Papp-a test too, so the computer burped out the high risk statistic based solely on that plus my age (& the midwife even said postcode which can apparently influence your “lifestyle” factor which seems ludicrous, Glasgow is high in the risk sector for living in apparently) so add that to BMI etc and I was labelled “risky”..but really, it’s not diagnostic and is based on risk, whereas as you know the NIPT is more conclusive. Even then though, my cousin came back high risk NIPT and high risk from Amniocentesis (the next stage of invasive testing) plus she had high nucleal transparency…and even with all those factors, her baby was fine..an optimistic story! I’m sad there’s probably a backlog after the labs closed for Xmas, as they were bringing back results within a few days before then..but it’s back to 10 day waits now. Just have to take each day as it comes! Sending you well wishes let me know how you get on and so will I xx

Hey @LittleLifeGuardian, thanks for your message! I got my results in today and they were a relief as they were low risk. I still need monitoring for the low pap-a but today has lifted a massive weight off my mind. I have been thinking about you today too and hope you get some reassurance soon ❤️

Dearest @BabyBorn@MrsScotland@Lemondolphin I got the call from the midwife today to say I am low risk, all clear and aok, that baby can carry on in peace and normalcy. Relief and tears for sure!! So glad that @Lemondolphinhad good news too!! Didn’t realise how exhausting being brave is, totally going to sleep for a long time tonight and unclench my soul!!! Power and love to you and this wonderful NHS resource were lucky to have with the testing, as I know it’s not available everywhere. Thanks to Mumsnet too, women who support other women in crisis are worth their weight in gold xx

Oh I am so so pleased to hear this. What a relief, I hope you have a smooth pregnancy from here on in!