Low risk NHS test, high risk NIPT

[fingerscrossedmumma]

I don’t even know how to process this information. We’ve been on a long fertility journey of multiple first trimester losses so when we finally hit 12 weeks and got the all clear from the NHS (my screening risk came back as 1 in 1300, my trust classes anything under 1 in 150 as low risk) I thought we were in the clear.

My anxiety got the better of me though (‘what if I’m the 1 in 1300) so I paid for a private NIPT test and got the phone call yesterday that I tested high risk for T21. I haven’t been able to eat or sleep since then. My husband is distraught and I am terrified.

I called my midwife who was so unhelpful and said that as my NHS screening was low risk there is nothing she can do from a private result. I ended up calling the hospital screening team directly who referred me to fetal medicine who I am seeing today.

What are our chances here? We would go down the TFMR route if it’s positive but it’s already looking so negative. I just don’t know how to go on. I’m taking my prenatals etc but I feel so stupid doing so.

How do I go on and survive? I am broken.

Thank you for sharing your story with me - it is honestly a shared experience that's so tough but I never appreciated how many people go through it. After the previous miscarriages I thought they would be the extent of my worries.
I think I would struggle with the medical termination although I flip flop between wanting to spend time with baby and to completely disassociate. but I'm chatting to the surgical place later today. Unfortunately they can't do it at the hospital so have to go to a dedicated clinic and that somewhat scares me a lot.

I am so happy to hear this for you! It also gives me hope for future pregnancies as I'm worried this is just something I will have to experience over and over again. Best of luck with this pregnancy!

It sounds as though you've had a hell of a journey, I can't imagine how much you've been through. I may be way off here but reading your messages you sound really conflicted, have you had plenty of support and all the information you need to make sure you're happy with your choices? Xxx

Thank you so much! I’m glad it brings reassurance. I also wanted to add that I read your previous comment - we disassociated completely and didn’t meet or see them. We didn’t name them or anything. We really emotionally detached from the pregnancy because it’s how we coped. I wanted you to know that if that’s what works for you you shouldn’t feel guilty or pressured to doing something you don’t feel comfortable with. I have no regrets about how we handled it.

I completely agree with @CSSL7 you have to do exactly what is easiest for you. My consultant told me that most women opt for the surgical option.

Have you contacted ARC - they may be able to help you come to a decision? Or at least talk you through your thought processes?

I have a counsellor which has been helpful - the choice for me is medical vs surgical, but have no doubts at all about termination - luckily me and my husband had this chat before even getting pregnant otherwise it would be so much more stressful now

I'm so glad you are well supported. I run an infant feeding group and do many mums talk about the lack of support they've had in difficult times. Xx

Yeah I find in general unless you look for it there is very little support - I was shocked by this after my first miscarriage. For me it was the worst day of my life, I guess doctors see it a lot so it was very much a "bye! Your next pregnancy will be fine!"