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High risk NT results

14 replies

Zeduk · 16/01/2024 19:38

I just wanted to find out others experience of getting higher risk NT results (both positive and negative)

I've had my 12 week scan today with a NT of 4.3 and it's thrown me through a loop, I've been given all the info and will be having a follow up scan at a specialists soon.

I was so happy about this pregnancy now really on edge, the baby was moving around so much in the scan and seemed really bubbly so was really saddening when we got the news from the midwife of the results

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BPop8 · 17/01/2024 11:10

Hi @Zeduk so sorry to hear you’re going through this also. I had a raised NT of 4.6 (although it was 5.3 the first time they measured) at 13 weeks 3 days, it’s been a rollercoaster since. My blood results came back high risk for Down Syndrome, Edwards and Pataus and I had an amniocentesis done at 15 weeks on Monday and should get the first part of the results tomorrow. It’s such a scary time and I completely understand how you must be feeling, it’s helping me to just take things one step at a time. I really hope everything turns out well for you.

MadeForThis · 17/01/2024 11:48

We had a measurement of 4.5 then the combined test came back at 1:5 for downs.

We paid for the Harmony test, got results back after a week and they were 1:10,000.

Dd was born with no issues. The rest of the pregnancy was monitored for heart issues as a high NT can also indicate heart problems. Luckily all was fine.

I was 35

MrsScotland · 17/01/2024 16:42

Hi there

I'm so sorry this is happening to you. I remember the feeling well, we were laughing at the baby dancing around and then the sonographer told us the NT was high and she would need to find the consultant. Eventually she came back and said they couldn't see us there and then, and we should return in 48 hours. I asked what the NT measurement was and she said 8.5/8mm. There and then we knew it was unlikely to be ok.

At the follow up, we also got the results of our blood test and I was 1 in 8 for Downs and 1 in 5 for Edwards and Pataus. Two weeks later we got the NIPT results and it was high risk for Edwards. Sadly we went on to have a TFMR.

It was an agonising limbo of two weeks, it broke my heart.

If you have any questions just ask

Zeduk · 17/01/2024 16:56

Thanks so much for your feedback.

I got my results today as well which were 1:2 for downs and 1:4 for Pataus, and also mentioned there is an issue with my placenta so I really don't think it's looking good.

I have another scan and the other test Friday - just trying to prepare mentally for it all.

How long did it take to get all your results back?

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Southwestmummy89 · 17/01/2024 17:07

Really sorry you are going through this, it’s such a mentally tough time. Have they offered you NIPT? Or an amnio?
iam also going through the waiting of NIPT result which was taken today.
NT 3.6mm
high risk DS 1:133
low risk Edwards & pataus
beta HCG- 0.9
PAPPA-A 1.9

just a waiting game now isn’t it? And I find that’s the hardest part. Sending hope and prayers your way also

MrsScotland · 17/01/2024 20:42

Hey. I had to wait 48 hours for my initial blood tests. I then had a NIPT but had to wait 6 days for it - only offered on certain days in my area due to lab processing. I had it on Tuesday, got the results the following Monday. My fetal med appt was the day after that and we had initially thought we’d have a CVS that day but decided not to go ahead with that as baby was clearly very unwell.

It’s all still a bit of a shock when I write it down. It was incredibly tough to go through but we survived it and we’ll be ok x

Bloodystressed1 · 18/01/2024 17:24

Really feel for you @Zeduk - ive just come out the other end of something similar. Had a 4mm NT at 12 week scan , 1:2 chance of Downs. Had NIPT which came back low chance but didn’t have an amnio in the end - baby was born last month healthy and well, and no Down Syndrome. My Papp-A was borderline. It was a horrible time, I feel for you so much. The consultant I saw at the end of my pregnancy was really lovely though and said the high NT measurement Is just an indicator that needs further investigation, it doesn’t necessarily mean anything and a lot of the time it works out fine. Really hope that’s the case for you.

Zeduk · 18/01/2024 17:53

Thank you for your message- it's good to hear from someone who has experienced seemingly equally insurmountable odds. It gives me a sliver of hope at least that it may turn out okay.

I think the waiting and not knowing is one of the worst things in all of this, I can't rest.

Hoping I'll get some clearer answers tomorrow, whatever they may be

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Zeduk · 19/02/2024 18:30

Incase anyone looks at this thread for an update - unfortunately we lost our little boy, due to a chromosomal disorder and heart defects.

Luckily the nurses and doctors I have dealt with have been really empathetic, but it will take me a while to get back to normal.

Thanks to everyone who gave me advice xx

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Bloodystressed1 · 19/02/2024 18:33

@Zeduk so sorry xx

Whoopaday · 19/02/2024 18:38

Very sorry to hear that

BPop8 · 19/02/2024 19:11

So sorry to hear this @Zeduk , my outcome was also sadly bad news and it’s been just over 3 weeks since we said goodbye. I’ve joined a group on Facebook called TFMR mamas and it’s really lovely to connect with others who have been through the same x

Zeduk · 19/02/2024 20:53

BPop8 · 19/02/2024 19:11

So sorry to hear this @Zeduk , my outcome was also sadly bad news and it’s been just over 3 weeks since we said goodbye. I’ve joined a group on Facebook called TFMR mamas and it’s really lovely to connect with others who have been through the same x

So sorry to hear it was bad news for you too.. it's so heartbreaking isn't it. I have recently joined the same group and have found some comfort in it x

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