Worrying result...

[SometimesUnsure]

12 week scan today. NT scan 4.1 so above 3.5 threshold. Measuring ahead at 13+1. Spoke with consultant and everyone involved was professional and nice about it. They went through the %s and process etc.
Reading through everything and some people's personal experiences timelines seem to vary so I'm confused.
We opted for the blood test part and told the wait will be 7-10 days then what happens depending on that result.
How do people manage this? Just go to work and hope the phone call with results is a positive one? I don't think I could go back into a classroom after receiving concerning results over the phone tbh but don't know what day/time the call will be...
Some points I've read online they've been scheduled the CVS the next day but consultant told us 7-10 day wait for blood screening, then NIPT then potentially CVS/Aminocentsis (not sure about either of those 2 yet tbh as it's more to be prepared than to make a decision to terminate).
Where do we go from here?
Do people take time off? I've been on and off crying, I would probably feel better if I had a good cry but it's not forthcoming. Feels a bit extreme to take time off when there isn't anything wrong with me persay and may not be anything wrong at all.
Even appointments I'm not sure about it all. DH is only entitled to 2 6.5hrs in terms of being off for appointments and his boss is the type to enfore it.
I'm lucky in that I have a supportive husband and family, although I haven't yet figured out telling those that don't live close by. I'm also not concerned about decisions to make as unless it's my life at risk I don't think I could go through with termination.
Any advice or experiences might help shut my brain off kr at least help me understand my thoughts better. I just can't get it to stop, stress has triggered a migraine but even then I can't sleep.

We had bad news at a scan at 16/17 weeks and I continued to go to work while doing all the extra scans/tests/appts. I needed to be distracted as when not at work I sat and googled/searched online etc. I don’t think you can or would be beneficial to go off sick just off the NT measurement. Good luck. You never know what decisions you will make until you are faced with them in your real actual life.

Sorry to hear you also had bad news x

Exactly what I was thinking. A few people close to me asked if I'd be going in and I thought maybe I was being odd about it. I'm the same googling etc. although DH is good for distracting me. Just really anxious about getting the call in work even though I know there's nothing I'll be able to do right then either way 🤷‍♀️

Just to let you know our timeline in case it helps... but I imagine there is variability by region.

Concerning nt on 12 week scan - but much higher than yours with some other concerns so referred straight to fetal medicine and told appt would be within 3 days.

Blood test taken for combined screening at 12 week scan - told if bad news we would get a phone call within 7 days, it was actually only one day.

Seen in fetal medicine 2 days after the 12 week scan (so 2 days after the referral). Rescanned and offered cvs at that appointment.

CVS takes 3-5 days for results.

Hope that helps - from our experience it's all been very quick, so although the wait is awful, hopefully if you don't hear anything no news is good news.

Really hoping you have a good outcome 💛

I had a cystic hygroma picked up at my 12 week scan (not the same as nt measurement but indicative of same issues). I was referred straight to fetal medicine and had combined bloods same day. Fetal medicine appointment was a few days later but they couldn’t do CVS due to my placenta position so I had the NIPT on that day. NIPT has come back high for trisomy 21 so I’m going in on Friday when I will be bang on 15 weeks for amniocentesis.

I’ve been signed off work but that’s also partly because of what I do as a job (therapist in mental health) I can’t be effective in dealing with other people’s trauma when going through this myself.

Thanks you all for your replies and time. It's tough knowing so many people face such uncertainties but helpful to know others stories. I feel for you all x It's hard saying I don't know when people ask about this, that or the other when we just don't know. @Notsure31 I can't imagine dealing with this with your job. I'm very unfocused in work today but hopefully that's lack of sleep kicking in. Work haven't been kind - straight into covering for a colleague without any check-in from higher up (Head of Dept is fab but its beyond her control).

I had a higher risk combined screening result for DS followed by amniocentesis.

It was a horrible wait but I did get a small amount of comfort reading positive things about babies and children with Down Syndrome and support available.

I know a lot of people think that invasive testing is a pointless risk if you wouldn't go on to terminate, but I know myself and getting a clear answer as early as possible was the right thing for me.

As it happened, my amnio was clear.

Whatever the outcome, this limbo period is awful. I did work as normal while it was going on and appreciated the distraction, but if you do need signed off then don't hesitate to do so.

Our NT measurement at 12 week scan was 3.6mm - they took blood on the day for the combined test and asked if we wanted a CVS (which we did) so that referral was sent off same day. I followed up (CVS was to be at a different hospital) and got booked in for CVS 5 days later.

At CVS appointment, very lovely midwife chatted me through the procedure but also put in a call herself for the combined screening results (I think it had been exactly 7 days at that point) and shared them with me in person.

For the CVS results, she gave ME the number to call them at fetal medicine and said they much prefer doing it that way so people can call at a time that suits them - I thought this was brilliant.

Is there any way that you can call your midwife and ask them not to call you but you call them to check results? That way you won't be caught off guard.

100% agree with @smallchange on this: "I know a lot of people think that invasive testing is a pointless risk if you wouldn't go on to terminate, but I know myself and getting a clear answer as early as possible was the right thing for me."

Hang in there - I know how awful it is and you have my sympathy. x

I’ve been through this twice. First time NT was 3.8mm. I had the nipt on the day and low risk result a week later. DS is perfectly healthy. Second time, NT was much higher. I was taken to see the consultant straight after the scan. She confirmed the baby wouldn’t survive pregnancy so I didn’t have the cvs (although she was happy to do it there and then). Had a termination 4 days later and results of post mortem testing 6 weeks later.

Good luck, I hope you get the news soon.

Thank you for sharing both experiences. I'm glad your DS is doing well x
We were taken to the consultant straight away too but she just went through statistics and processes. She mentioned termination once. She was nice about it all. The person who took ny bloods was very complementary of her and said she is good for ringing as soon as she can etc. which was nice to hear.
It's a bit disconcerting how the process differs. I would definitely have accepted an offer for NIPT as soon as practical etc. but such is life!

Thank you for sharing your experience.
We went for a private scan yesterday which was a much more positive experience even though the measurement was still the same. She mentioned about how the drawn out wait is unpleasant when they could have gone straight to NIPT and arrange for any further tests ahead of time. I'm grateful that you had some human element with your results and a little control over when you received them. I think I will try and get in touch with them to see if that's possible. Obviously I'm anxious about all of it but my mind keeps going to am I going to receive difficult news and have to go into a group of 30 people, even the thought of positive news and not having time to really process it is daunting. Its an extra worry on top of all the what ifs. I don't have the self-restraint to miss the call and have to ring back, nor do I feel I should have to in this situation.

I agree with you both about the invasive testing. What will be will be in terms of the risks, its higher risk anyway. I would rather be prepared and knowledge is power. It can't change outcome but it can empower us to make the best we can out of a potentially difficult situation!

Op - we were told High nt alone wasn't grounds for nipt testing (don't know if this is area specific) despite knowing from v v high nt reading that combined testing would be higher risk.

As we were referred straight to fetal medicine anyway it didn't delay things for us as we had cvs 2 days later, but it does seem a ridiculous policy.

Hope you get answers soon 💛

OP - have you heard anything yet? Hope you receive positive news.. i had my NIPT yesterday.. my combined screening test results came back with high hcg levels so classed as high risk.. the wait for results feels like the longest wait ever, full of anxiety and stress 🥺.. sending you lots of love

Still not heard anything! Should hear something between Monday-Wednesday. I managed to switch off a little bit over the weekend knowing a call isn't likely at least. I'm expecting the result to come back high risk. We've been warned on the measurement alone it's likely to come back high risk so fully expecting to be in the same boat with the anxiety x Just trying to stay positive or at least neutral. Sorry to hear you got a high risk result 💙 Hope the NIPT comes back with some positive news x

Hi.. hope you're well.. just wanted to check in on you to see if you're okay and if you've heard anything yet? Xx

@Cherry1703 Thank you for checking in x
Still waiting(anxiously).
I've phoned midwifery (didn't get my usual midwife). They said no news is generally good news and that they can't give them over the phone. Any concerns the consultant will ring. Feels like a dead-end without the end actually in sight...

I have a feeling it will be good news! I know it's difficult but try to stay positive.. it's been 10 days now since you gave bloods, right? If anything was to look slightly out of range on your bloods, I'm sure you would have got a call by now as I got the call 4 days after giving my bloods.. fingers are crossed for you, keep us updated and I'm hoping you have a positive outcome and everything is okay xx

Just an update.
I rang again today to query 20 week scan appointment as I haven't been given one. No one I spoke to (3 different people) knew why but all confused and felt it merited being referred up the line. My consultant is being contacted about it as (a) there would usually be a call anyway and (b) they don't know who is meant to book the scan and when for in case the consultant needs to follow up in the meantime.
Now anxiously awaiting call from the consultant (again).

Hi Op how did you get on?

Sorry. Made a mental note to update then forgot 🙈
Finally got a call back in the evening. I was very surprised - had resigned myself to another night of waiting.
We ended up being told the Downs test was 1/337 and the Edward/Patau 1/5000. Both lower risk so no further testing offered. The consultant has arranged for a fetal medical scan at the 20 week scan. Hopefully that goes OK 🤞

Oh phew, good news so far then! I'm happy to read that xx

Good luck with the fetal medical scan.

Just an update for anyone on the thread or for anyone in the position I was in. LO arrived happy and healthy. The scan results played on my mind throughout the pregnancy, especially at the end despite all scans being positive but I think if I hadn't that to worry about it would have been something else.

That's great news - congratulations on you new arrival and hope you're enjoying lots of lovely baby snuggles💐