Clutching at straws now, amnio test ...

[Daisycat16]

Feeling utterly hopeless at the moment and know the outcome won’t change. Recently had harmony tests back which places us at high risk for DS. Trying to get my head around the news as the scans show the NT had reduced from 3.9mm (first scan) to 2.9mm and they haven’t picked up on any soft markers for DS. I keep telling myself that the reality is the harmony test is very accurate and essentially the baby has DS. The amnio is more of the next step procedurally to confirm what we already know. I know I can’t change the results as desperately as I wish I could in my head, I guess I just needed a place to get things off my chest and wondered if anyone else is going through a similar experience

@Daisycat16 I have been there. So sorry to hear your story. Our NT was 'only' 3.3 so like you, the positive NIPT was a massive shock even though I knew our chance was higher. I couldn't even finish the phone conversation and just crawled into bed. Have you got good support from hospital? Have they talked about options or are you waiting until after amnio to discuss?
Happy to share more, but don't want to overwhelm with info/advice. Has anyone recommended ARC? There are also quite a few good posts on here from others who have been in your situation or similar.

Thanks @sickofthisyear, as you describe it also came to me as a complete shock. I think part of me is still in denial and desperately clinging onto hope the outcome will change but I know it won’t. The thought of going through the amnio to only know deep down what’s going to come back is heartbreaking but I feel I need to do it as a way of final confirmation I guess. Sadly I won’t be able to continue with the pregnancy and after talking with the hospital I should be able to have a surgical procedure as I just don’t think I’m strong enough mentally to get through a medically induced one. I was given a leaflet for ARC, I’m not sure what I would say but maybe it would be good to speak to them 😞

I'm glad the hospital are helping. We also chose to end the pregnancy- surgical procedure wasn't an option at my Trust but in hindsight the medical option that I was so afraid of was actually right for us (despite needing ERPC a few weeks afterwards 😕). The bereavement midwives were also amazing if you can contact any? I hope your results come through soon and you can start to move forward. I found the month between NIPT results and ending the pregnancy very hard, especially as I had a noticeable bump and hadn't told many people we were expecting. Overall I took around 3 months off work but everyone is different. Do what feels right for you, there's no set timeline.

I'm so sorry you're going through this. It's so hard. I hope you can start moving forward soon. I couldn't handle the idea of the medical procedure so I opted for the surgical one (had to go through a separate clinic but it was quite straightforward) and it was right for us. Everyone's different though, so do exactly what feels right for you. Do feel free to send me a PM if you fancy a chat. I've heard the ARC are amazing too so maybe worth chatting to them.

Take care.

Thank you for your supportive words and advice @BabyPotato and @sickofthisyear. It’s the waiting that is so hard until I can feel I can get some kind of ‘closure’ in my mind. Trying to hide bump as it’s a constant reminder. Thank you for sharing x

I'm so sorry you're going through this @Daisycat16

I've had similar exactly one year ago. At our NHS scan on a Wednesday the NT was fine, no T21 soft markers like nasal bone, but our little boy had an omphalocele (intestines growing on the outside), which isn't normally linked to downs. We'd had the harmony test done a few days before (Saturday) and the omphalocele wasn't picked up on then, I suppose they didn't want to worry us as there's a chance the abdominal wall closes a bit later than 11 weeks. After we didn't get the harmony test results back by Friday I said to my husband that I knew it's bad news. We got the results on Monday and the high chance NHS combined results the same day. We had a CVS on the Thursday and then the results confirming T21 the Tuesday after. It's the most surreal experience and it completely swept us off our feet as we have a healthy DS and never had any issues conceiving etc.
We also knew we weren't going to continue the pregnancy if it came back positive for T21.
It's a very personal choice how to deliver your baby, for us (or more for me) it was important to see him and hold him, to tell him we were sorry and I'm forever grateful that I got this chance.
I would also recommend the ARC. Sending you lots of love xx

Thanks for sharing your experience @NoCallerID. I am sorry to hear of your loss. It is such an awful thing for anyone to have to go through. We are currently awaiting the amnio results but are preparing ourselves as we know the chances of the harmony results turning out to be a false positive are practically next to nothing. I couldn’t look at the screen during the scan as it was just too hard but again the feedback is that everything looks ‘normal’ and no abnormalities have been picked up. I’m not sure if that’s worse in a perverse way as my head keeps telling me there’s hope. X