When does the worry end?!

[almostfamous]

Edit: Hi all, I've had my results from the nipt test and they came back as low risk for Downs Syndrome. The waiting for the results was the worst part! Still feeling a little nervous for my 20 week scan but hopefully I can get back to enjoying my pregnancy now. Thank you so much to everyone who responded, I really appreciate you sharing your experiences and your words of reassurance.

I'm not sure if this is the right place to post but have had really great support and words of advice to my previous posts so here goes... I'm currently 14wks pregnant after my second round of IVF(ICSI). Our first round resulted in only one viable embryo and a mmc at 7 weeks. Absolutely devastated. Second round produced two eggs from which we got 2 embryos. Transfered one of them on day 3. We got a BFP and thankfully saw a heartbeat at 7 wks. Was so paranoid about another mmc so was very reassured at our 13wk scan when they said everything looked good. I finally started to relax and get excited when we got a call to say my blood tests put us at high risk for Downs Syndrome (1 in 10 chance). We've taken the NIPT test and awaiting results early next week. I feel completely devastated to have got this far and now having to deal with this. I really thought this time was going well for us, I feel sick with worry waiting for results. I guess I'm just looking for a handhold or to see if anyone else has gone through this? Thanks for reading

[Weareback2]

Big hugs to you. I have had one miscarrage from a fresh cycle and one successfil cycle with a FET. When i was pregnant i was worried until my 20 week scan. I could't relax for fear of something happening. Things were very different due to covid which didn't help, however now have a 4 month old. Just wanted to say i think with IVF it can take the excitement away of being pregnant initially. Hope all goes well with the test! Xx

[almostfamous in reply to Weareback2]

Thank you and congratulations on our baby, IVF definitely takes the excitement away. I found it hard not having my husband there for our monitoring scans because of covid, but he's been allowed in for all of our pregnancy scans which has been much better.

[Sparklylife]

Oh I am so sorry you are going through that worry on top of everything else you have been through!

I am sorry I have no advice, but I just wanted to say I am thinking of you and hoping your follow up tests go well now! I know it is a high risk, so they will follow it up for you to get a more certain answer, but hopefully those odds still mean there is a 9 in 10 chance it is not. I know you will worry until you get results, but if you feel really bad with the worry and the waiting.. what has always helped me is going for a walk. Some nice relaxing music or just listen to the birds. I love people-watching and wondering what their life story is (because you never know by just looking at someone what they have been though in their life) and where they are going... perhaps that is not “fair” 😇🥰, but it always distracts my thoughts.

Wishing you all the best with your next results! Xx

[almostfamous in reply to Sparklylife]

Thank you and you're right, going for a walk and trying do distract myself is the best thing to do, I just feel so unmotivated now, I'll make and effort to get out over the weekend. I love people watching whilst in a cafe or a park...glad I'm not the only one! 😁

[CarolineDx]

Congratulations on your pregnancy, if I'm honest I don't think the worry does stop, it probably just comes in waves through time, even when they're born. Sending you a massive hug for the worries for the syndromes!! We had the same scare, 1/6 downs and 1/15 Edwards and Patau's syndromes. We did the NIPT test privately as the only options the NHS could give us to test had a risk of miscarriage, we've been through too much to risk that. When the lady was scanning me and taking my bloods she was very reassuring for the NIPT. The statistics that they give you are based on various factors that they put into a machine and it spits out the figure. The person scanning you may not have taken the neck measurement correctly/baby at a different angle, or some of your levels in your blood test may be what's throwing it off. My PAPPA A levels were low, which can indicate small baby and early birth, miscarriage etc, so I'm now on aspirin and more monitoring (glad I had it done now) but the two of those together made the computer spit out those statistics. Please remember it's not facts it's just an estimate and if I'm honest I think the NHS are extra cautious with it to cover their own backs. I hope the next few days go by quickly for you and you receive the email with good news. Focus on your gut instinct on how the baby is, try and do things to keep your brain busy, but remeber there's a 9/10 chance that the baby is all ok. Please do update us on here how you get on! Sending you a big hug !! 💕

[CarolineDx in reply to CarolineDx]

Also I wanted to say, I know they say not to but naturally we googled the different levels etc they came out with and seeing so many people having the same scare but we're all ok in the end which goes to reassure us that the NHS were just being extra cautious. Sending my best to you!

[almostfamous in reply to CarolineDx]

Thank you so much and so glad you got good results. Our NT was 2.5 so although a bit high it's still considered in the 'normal range'. Our PAPPA was low at 0.67 and HCG high at 5.49, I think it's the high hcg that worries me the most. And my age also bumps up our risk level. I know I'll get extra scans due to it being IVF (at weeks 28, 32, 36 & 39 I think) but did you get offered more scans that that to monitor growth?

[CarolineDx in reply to almostfamous]

Yeah our NT was something like 2.8 but like you say still classed as normal just the higher end of it. My pappa a was 0.49 I think but cant remember my HCG and what they said about that, there's so much info they give you its a blur and by the I just wanted the ground to swallow me up. Yeah they said after this they would monitor me more often with those weeks you've mentioned, the main reason I think was because of the pappa a level, have they asked you to start aspirin? Keeping my fingers crossed for you xx

[almostfamous in reply to CarolineDx]

No the nurse didn't say anything about taking aspirin but I'll ask when she phones with my results. I'll also ask if there's anything else the high hcg might indicate. I couldn't stop crying when I was speaking to the nurse so really struggled to take in what she said, I had to phone back the next day to get a note of our results because I couldn't remember them by the time I got home!

[CarolineDx in reply to almostfamous]

Oh yes definitely write down as many other questions now as well, it's good you've got a direct number to the department now as well for any worries down the line. Sending my best wishes and please let us know how you get on xxx

[McQueeny]

Big hugs to you! Sorry it’s such a rough road. The worry doesn’t end... you wait for your BFP, then your 7 week viability scan, then your 12 week scan, then NIPT results, then the 20 week scan, then you just hope it all goes smoothly 🤦‍♀️ BUT - though 1 in 10 sounds super scary, remember that the odds are still massively in your favour - 90% chance - that everything is absolutely fine. I got a 1:27 risk rating, did my NIPT and it came back as 1:10,000 and had a perfectly healthy boy. Fingers crossed for you and be good to yourself 🤞 x

[almostfamous]

Glad it worked out for you and congrats on your little boy. I just need to try and keep myself busy over the next few days and then we can deal with whatever the outcome is. Thank you