Screening results in twins: high risk

[Twinsat42]

Hi
I am 42 and expecting fraternal twins, I have been given high risk DS of 1:100.
My results were;
NT 1.80mm / 1.80mm
Beta hcG free 3.76 MoM
Papp a 2.54 MoM
I’m so worried, and they couldn’t tell me what a ‘normal result was for twins, and were vague at the reality of if the risk is on one or both. Feel quite upset by lack of support and just wondered if any other mums Singleton or twin had similar results?
NB: The hcG and Papp a results are for both together.

Sorry Papp - a was 2.47!

Hi OP
No advice but bumping for you in the hopes somebody can give you some help and reassurance

Hello,

Sorry you are going through this, and I can empathize. I am [regnant with fraternal twins. At my scan around 11+4 weeks, one twin was measuring with NT of 2.9mm and also no nasal bone (other looked fine), and we were told there is risk of abnormality.

We did the harmony test, and it came back inconclusive for me (i was the unlucky small % ), but generally it does work for twins. Can you do that ?

We did the CVS in the end as I wanted to know for certain given an issue would have impact on other twin too, and i didnt want to wait for another draw of harmony incase it had the same issue.

Sorry you are going through this, but there are tests available, and Harmony seems like a good next step as i believe it is pretty accurate for twins too xx

Also, sorry, I wanted to add, your NT measurements look perfectly fine and well within limit. I never knew my HCG or PAPP A and / or wasn't raised, but certainly the NT which is often a soft marker for anything looks well within the limit (i think it is 3.5mm)

I think your age-related risk would be around 1:55, so although your results are ‘high risk’ they’re actually lower now that you have some more specific factors (NT and bloods). I hope you get some more advice soon.

I think as the NT for both is the same

I had the harmony done last Monday and still waiting results I figured non invasive was best and if it comes back high/99% then we would look to have the invasive. It’s jsut the not knowing what the ratio of ‘normal’ is and understanding if other people have had the same but twins were ok. Being high risk pregnancy anyway I seem to be coming up against things one after the other :(
How did you get on with your testing?
Thinking if you too it’s tough x

@Simz01 I have had the same result from harmony, waited 9 days for result and they said they needed to redraw, agonising and means 2 weeks of precious time wasted I would of thought with twins there would be more dna in our blood not less?! Seems odd. So I had redraw today and they’ve said results will be back next Friday. I’ve pushed my emotions and stress to the limits that I’ve now accepted it’s out of my control and I need to enjoy this special time with my babies while they grow and not wish the time away, no matter the outcome and future.
How far along are you now? I’m 15+5 today
Hope you’re doing well, it’s till getting quite a bit of nausea. But I’ve been lucky other than that.
Milly x

@Rhubarbe that’s a good point re risk. Also my Papp-a is high which is the opposite of risk! Its so very unclear and certainly for multiples even the screening nurses coudl t give me any clear ‘normal’ levels. It’s such a difficult situation. I was looking and the 50/50 split (doubtful it is actually that clear split) would be 1.88 beta free hcg each.
Which is high but not anywhere near what some people’s levels are. What were your results like? X

I had to have a redraw for twins too. With hindsight I wouldn't have had the nips for twins because it just caused me a lot of worry when there was nothing to worry about. The thing with it is that if you do get a high risk result then the nipt won't tell you which twin it is either and remember it only tests for the 3 big one (downs, edwards and patau?) and is only a screener so can't diagnose anything.

I would probably speak to your hospital and see what they suggest next, a cvs might be a better option or they can do an anomaly scan from around 16w I think so that could be an option ?

Sorry you are going through this xx

@Twinsat42 I would definitely try and enjoy the time. These tests make us so anxious and half the pregnancy is gone before we know it x

It was frustrating re the harmony , and it’s a not a short wait either, so after all that and to be told no result is so disheartening. I don’t know why either , although I have heard it happens in twins. Also heard if higher Bmi or much taller etc - but I am 4ft 11 and under 7st ! So just unlucky or twins. I wish you all the best for these results - do try and relax. I do read in more cases it is anxiety for nothing and really hope that is the case with yourself

I am 19 + 2 - having my 20 week scan so the nerves are kicking in again. Like yourself I tried to put it all aside for the last few weeks

Hope you are doing ok xx

Thanks @Simz01 I should get the 2nd attempt results back on Friday. It’s just agonising and my results just aren’t straight forward as my HGC is high but mum PAPP-A is too which is opposite of high risk. My NT is fairly low at 1.80mm so nothing is consistent. I have gender scan Monday that I’m looking forward to! Do you know what you’re having yet? enjoy your 20wk scan, I have a 16wk one I think in a week (a week late!?) because I’m high risk pregnancy I have them every 4 weeks but it really drags when it’s approaching! Hope you’ve kicked the morning sickness by now etc? x

@JessicaPeach did you manage to get results from the redraw? Mine should be back by Friday eve, so I’m really hoping they are able to test or I’m going to be really upset again... with the 12wk screening I got really frustrated with the screening Dept nurse Because they should explain that it’s very Unclear and not precise for twins, they showed my numbers as a total on everything but NT so you’re left to half guess what’s what and when I asked for clarification they couldn’t give me any. After being very blunt that I was high risk of downs they had nothing to back it up or explain it all. Was horrible. Did you have a Normal harmony Or high?
If Harmony comes back high I will have the amnio so that we can find out if one or both or what specifically in better detail. I can’t have CVS as I’m now 16wks and by the time I get results I’ll be 17wks. The time moves so quickly and I hate the fact they’re growing day by day and if I had to terminate they’re getting bigger and it upsets me to think of that. What is the anomaly scan? I might ask for that next week when I see consultant.
Thanks your message has made me feel better xx

They call it high risk, but don't forget actually in really world terms you are 99% likely to have no issues. I had individual risks based on each twin, but not taking into account bloods, so soft markers etc. Hope Friday rolls around quickly for you.

I had a low risk result from my redraw, but in the meantime also got a low risk result from the nct too. (I originally went for the nipt just because I was expecting a high risk result from my nt because of my age-39)

It is frustrating that they can't give you much info re the risks, it seems to be a very unreliable algorithm, particularly once you introduce any kind of outlying variable like age or a multiple etc. Even after I had my low risk result I still worried until after 20 weeks that there might be some other issue because obvs the nipt doesn't cover everything. I'm 25 weeks and still worrying, even though I've been given no reason to, I think being old and having twins gives us a lot to think about!

Hope everything goes ok for you, the odds are in your favour xx

Sorry forgot to say the anomaly scan is the 20 week scan, sometimes if there's stuff going on they can do it form about 16 weeks

My friend had a 1:2 result (singleton pregnancy). Went on to have further screening which came out fine and baby was born healthy and with no issues. No one can explain why she got 1:2. So try not to worry. X

@Twinsat42 wish you lots of luck for your results and so sorry you have to wait that long. It’s horrible I realise. Please do try and take some positivity that a most of the times these things turn out to be fine but cause us so much anxiety. Twins is tough , esp with results.

Our 12 week scan was horrible and I had to leave trying to stop myself crying. The doctor was laying out all the scenarios and the one that stuck was that there is a high chance of something wrong with twin a. We had our 20 week anomaly scan today and everything had normalised. A lot of things can change after initial results. I have everything crossed for you xx

Fingers crossed for you OP. It's a horrible time having to wait.

I had the same with my fraternal twins, the screening department couldn't tell me why I was high risk as NT was fine i just had high HCG which from a quick google search is to be expected with twins. My hospital refused to do a harmony for twins and said it had to be CVS so I went through the stress (and pain) of the procedure to be told everything was fine with both of them and they could never answer me why it was ever high risk. It was a lot of stress and obviously the risks from the CVS on top of that so I really do sympathise, it's a shit time when you should be able to enjoy an amazing twin pregnancy

Hi op. Just wanted to share my story with you. I have fraternal twins age nearly 4 now. At 12 wk scan (age 35) my T2 had an NT of 6.1mm. The combined risk was 1:14 for DS and 1:28 for Edwards and Patau. We later on at 15w discovered that T2 had bilateral talipes (clubfoot) too and then short long bones. And he was always small for gestational age compared to his sister T1. Lots of marketers pointing to chromosome abnormalities. I had a NIPT which came back as less than 1:1,000,000 and we had a late amnio at 29w too which came back all clear. Fast forward to now, they're 3y 10m and nothing wrong with either of them, 100% healthy. It is such a worrying time, i didn't enjoy any of my pregnancy and completely understand how you're feeling. Stay positive. And remember the medical staff with always err on the side of caution at the end of the day they have to cover themselves. It doesn't lessen the stress it causes of course but they have to do it.

Markers not marketers 🤦‍♀️

Thanks ladies so so much for all your responses. It’s improving my well being which has taken a hit the last month.
And also glad your own experiences have turned out well ❤️
The pregnancy journey is far more stressful than I’d ever realised. But in other ways I wouldn’t change how it makes me feel for anything!
So thank you all, it really helps and here if anyone wants to chat/ask anything too.

Milly x

How are you @Twinsat42 ?

@JessicaPeachStill waiting to hear results, how are you?

[quote Twinsat42]@JessicaPeachStill waiting to hear results, how are you?[/quote]
I can't believe you are still waiting! What a nightmare! Hope you get some results soon x

@seashellseashell123 do you mind me asking what your numbers were for HcG and Papp-A do you remember?