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Original poster

NT screening results

25 replies

BrutusMcDogface · 17/01/2018 18:49

I had the results today; risk of trisomies 13/18 is 1:184, which they're saying is not a heightened risk therefore they won't do any more testing, but I can't stop thinking that it's not as low as I'd like.

Any one got any advice/similar stories? Also- would you recommend the harmony test?

Thanks!

OP posts:
Original poster
BrutusMcDogface · 17/01/2018 18:50

Trisomy 21 is 1:284.

OP posts:
TammySwansonTwo · 17/01/2018 18:53

Technically that isn't a high risk - could you consider paying for NIPT privately?

Original poster
BrutusMcDogface · 17/01/2018 18:57

Thanks Tammy. I might do. Have been looking up costs! 😱

They are going on a guideline of 1:150 so I'm just a bit worried that I'm cutting it fine....maybe I'm being ridiculous?!

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TammySwansonTwo · 17/01/2018 19:27

I had similar results but had to tell myself that they make the cut off 1:150 for a reason, and that if my results were 1:150 it would still have been very very unlikely. I know it's tough though.

KimmySchmidt1 · 17/01/2018 19:44

I think it’s important to try to be rational. Do you have any facts or experience or knowledge which justifies doubting the experts? These people have worked extremely hard and achieved a great deal of academic success. Respect that - expertise is not worthless. Try to trust the people with vastly higher knowledge and experience.

Original poster
BrutusMcDogface · 17/01/2018 20:03

Oh I don't doubt the experts! Not in the slightest! I'm just worrying that 1:184 seems a bit low, that's all! I'm sure my other children were in the thousands.

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bathandpjs · 17/01/2018 20:05

Sorry to hijack your thread, but how did you receive your results and how long did it take?

I'm really sorry I have nothing useful to add

Bellamuerte · 17/01/2018 20:12

I was technically classed as low risk like you, but I was still worried so I paid for the Harmony test. It came back low risk and was worth it for the peace of mind it gave me.

Original poster
BrutusMcDogface · 17/01/2018 20:31

Thanks, Bella. Glad all was ok with you! Flowers

Bath- no worries. I had my scan on 9th Jan which was last Tuesday, and got results today, so it's been 8 days. I was told that if there was something wrong, they'd call within 2-3 days but if not, I could expect a letter by two weeks. Hth. All trusts are different, though! Are you waiting for results?

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Springersprung · 17/01/2018 23:29

I got a low risk but worrying (to me) score for Down's. I was advised to convert the score to a percentage. If my maths is right, your score for trisomies 13/18 converts to a 99.5% chance of everything being fine. Hope that reassures you at least a little bit.

Afraid I can't comment on Harmony testing as decided not to go for it myself.

bathandpjs · 18/01/2018 08:23

Thanks Brutus. I had my scan on the 9th too.

lookingforthecorkscrew · 18/01/2018 08:26

Your age is a factor in calculating those risks, it isn’t just blood work. I was 32 when I had DS1, and his risk was in the thousands. At 36 with DC2 it was in the hundreds. The dr doing the screening explained that my age was v much a factor, and still not to worry.

SleepingStandingUp · 18/01/2018 08:32

Have you had your anomoly scan yet? Most babies with Edward or Patau there are clear indicators on the scan. Even at the 12 week scan they can sometimes pick up anomalies with the baby.

If you wouldn't continue with the pregnancy with a positive result then is consider finding the money for the Harmony test etc.

Otherwise i'd remember this is less than 1% , chance and hold out for the anomoly scan

Original poster
BrutusMcDogface · 18/01/2018 09:26

Thank you all Flowers

Wow, when you look at it as a percentage, it looks good. Thank you so much for opening my eyes to that, Springer!

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Original poster
BrutusMcDogface · 18/01/2018 09:27

Haven't had anomaly scan yet but it's a long way off...I am 37 so that's clearly affected the results. Thanks again!

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Babykoala1 · 18/01/2018 14:43

I think at 37 that number is quite a low risk Smile When I was pregnant at 26 my adjusted risk for Trisomy 21 was 1 in 195. My daughter does not have any chromosomal abnormalities. I understand your concerns but the odds are most definitely in your favour!

AnotherBunIntOven · 18/01/2018 21:29

Yes it's low risk. But if you're concerned I'd get the NIPT done. I got my results back today and all clear😃 load of my mind and I can relax.

I don't want to scare you with what I'm about to say, but my experience has lead me to getting an NIPT in every pregnancy. I always recommend them to my friends. Better to waste £350 than bury your head in the sand.

My first little boy had DS. I was low risk 1:2500ish. 12wk scan all clear. Things didn't crop up until my 20 week scan and as this was a few years ago NIPTs were not that well know of. I eventually came across the test and got the DS result. That coupled with the complications from the scans led us to say goodbye to our little man at 6.5months. It was utterly heartbreaking and not something I would ever want to see anyone needlessly go through, hence why I am telling you this.

You are low risk though and in all probability there is nothing to worry about, but the fact you posted suggests you are worried. The test is worth it just for piece of mind if nothing else.

Hope you take it and it feels like you've wasted your money! At least it means you are content with your results, whatever they may be.

Good luck, xx

K99M · 19/01/2018 10:41

Hi there new to this thread & never been on one of these sites before, so sorry to hijack onto this conversation. I’m 14.4days with my first baby. My partner has a beautiful 6 yr old girl. I’m 36 & at the 12wk next was told although baby looked fine the NT measurement was slightly high at 3.8 (cut off is apparently 3.5) My partner & I were in complete shock & very upset. We were told that because of my age, NT my bloods would probably come back bad too & put us high risk. Sonographer did say baby had a nasal bone which is positive. They unfortunately were as we got a call 4 days later saying we had a 1 in 6 chance of Down’s syndrome & 1 in 70 for Pataus. As you can imagine I felt crushed!! Because of the odds my partner & I opted to go for the CVS procedure (needle into placenta) to find out 100% if baby has a chromosomal problem. It comes with a 2 in 100 chance of miscarriage but with our awful odds we decided it was a risk we’d take, such a horrible decision but the right one for us. CVS couldn’t be done first time as my bowel was in the way, the consultant said that baby looked fine though & she said it didn’t look like Pataus which was slightly reassuring a week later went back & it was done. Unfortunately for me the needle wouldn’t go through(sorry if it’s too much info) first time & she said it must be a slightly blunt needle!! Not exactly what it want to hear from a consultant!! However she tried a different needle & it worked perfectly. I’m not squeamish at all but I couldn’t look & just squeezed my partners hand staring at the ceiling. It didn’t hurt but felt horrid a pulling sensation and a slight twinge as needle got through the muscle(again sorry for detail). I was told to rest for 24hrs & don’t lift, run etc for about a week. I may have mild period like cramps which is normal but anything more painful than that or bleeding to back straight away. Fortunately I haven’t cramped or bled at all just feel tender & sore where needle went in. I was emotionally drained so just lay on the couch for 2 days. They said the results take 3 days but again (just my luck) the weekend will get in the way making it 5 days!!! So frustrating & the worry is killing me! This is my first baby & im terrified something will be wrong I’ve heard people with 1 in 2 odds come back with perfect results & keep trying to tell myself there’s 5 chances my baby will be ok. So scared with (as I keep mentioning) my luck I’ll be the 1!!

Sorry about the length of this post it’s war & peace! I guess I just need to offload & ask if anyone else been through or is going through this?
I should get my results on Monday.
If you get this far thanks for reading or have any advice or experiences good & bad to share that would be great. Thanks xx

SleepingStandingUp · 19/01/2018 10:48

Sorry you're going through this too K99. Sounds like you risk for Patau is pretty low in real terms which is great. Even with 1 in 6 for DS sounding high, that's over 80% chance all is well.
There's lots of support on FB groups etc if you do get a positive diagnosis for DS and lots of rl support too once baby is here too. Hopefully you'll get the all clear after the weekend x

K99M · 19/01/2018 11:27

Thank you for your kind words & support! It’s horrible we’re all having to go through this. I’ve been trying to concentrate on that 80% it sound so much better than 1 in 6. Fingers, toes & everything else crossed for Monday & for everyone else waiting on there results too! I’ll keep you posted! X

Original poster
BrutusMcDogface · 19/01/2018 12:40

Oh K99M, I'm so sorry you're going through this. How traumatic. Everything crossed you get a good result on Monday Flowers

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K99M · 19/01/2018 14:14

Thank you BrutusMcDogface. I’m so glad the rest of he people on here seem to have had really positive results. Such a stressful time but so far so good after CVS🤞🤞I think it’s took a week but I’ve kind of accepted what will be will be. It’s really helped sharing on here. So Thankyou again X

GetOffTheFrog · 19/01/2018 14:47

OP if you're still anxious, and can afford it, get the NIPT. A couple of midwives have said to me that the combined test is a bit clunky and not worth the paper it's printed on. For the peace of mind it will probably give you, I'd do it.

tiptopteepe · 19/01/2018 14:50

Im getting the serenity test done (which is the same as the harmony but you get the results from london so it was quicker) Its costing me £350 but i think its going to be worth it just to set my mind at rest.

My results from the NHS were 1:300 which they do not consider high risk but for me I felt it was as it was so so much higher than my last pregnancy. xx

Juststrugglingabit · 19/01/2018 14:53

If it helps at all, I had my 12 week NT tests done privately (next day results and 3d scan thrown in!) by a fetal medicine doctor. I was interested, so she showed me how they calculate these results.

It is a computer program based on the outcomes of thousands of combined scan, maternal age and blood test results. She even showed me how age can change the results dramatically. For example, I turned 35 recently and therefore the computer program will not give a result above a certain score, even though the scan and bloods were (happily) excellent. She also explained that this is a fail safe to make sure any woman who is even close to needing further testing gets it. She felt that looking at it in terms of percentages is exactly the right thing to do, especially where you are considering invasive testing.

That said, it's hard and I would be really worried too had I not had such an in depth conversation about it all.

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