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Original poster

I'm still sickened with anxiety over the Nuchal test results... Please help :(

38 replies

pookiedoll · 23/01/2019 13:24

I cannot stop worrying. Couldn't sleep last night. Just wondering what if something is wrong. I feel like the doctor robbed me of any excitement and now I will worry the entire pregnancy. I posted about this yesterday. I'm 12 weeks pregnant. Nuchal came back 2.4 which I was told was borderline and NIPT came back negative. I am not going to the CVS/aminiocentisis b/c I fear miscarriage at 40 years old and not sure if i'll easily be able to get pregnant. This is my first pregnancy. Has anyone received news like this and felt sick with worry? I need reassurance. I am scheduled for early anatomy scan at 16 weeks.

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Kescilly · 23/01/2019 13:29

You're incredibly anxious over a normal, low risk result. I think at this point you need to talk to a medical professional about ways to treat your anxiety. Pregnancy and motherhood can be full of opportunities for anxiety, and you'll need to find a way to handle them.

You're not alone in feeling anxious, as most of us here probably have felt that at some point during pregnancy. But this seems to be interfering with your life in an unhealthy way and your quality of life could improve if you speak to a healthcare professional.

Megan2018 · 23/01/2019 13:30

@pookiedoll

Please book in to see your doctor - are you outside the UK?
This level of anxiety over normal results is not healthy and you need some support with it before it takes over. I am speaking as someone with anxiety issues - they can help you but you need to ask.

SandysMam · 23/01/2019 13:35

It sounds like a completely normal result given your age. You need to focus on how lucky you are at 40 to be pregnant at all. Do you fear that your child might not be “perfect”? Even if it doesn’t have DS, it may be autistic, or anorexic as a teenager or have some other imperfection. Your child will be who they will be and if you want to be a mum, you need to realise this and accept whoever it is that comes to you. If you only want a perfect child then you will struggle through this journey as a parent.

Original poster

pookiedoll · 23/01/2019 13:36

The doctor told me it was not normal though. This was a high risk dr. She said borderline and was discussing termination being harder if I wait. I told her that I would not be terminating unless baby has down syndrome. I am in the US. I also called the regular ob/gyn and he also said its not normal. That it's high.

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brokenhead · 23/01/2019 13:36

Hey I had 2.5 I was worried but my blood results said I had no increased risk
I am a very anxious person so I've left it at that and I wont be researching any more into it
I'm 26 and I can't change the outcome of the results so I'm not sure why I would have more testing
It's horrible to be constantly worried but if you've been told it's normal you must try to focus on other things

Original poster

pookiedoll · 23/01/2019 13:44

@brokenhead

I think what really through me for a loop is dr. was discussing termination. If she is saying baby doesn't have down syndrome then why would she even suggest that. I just don't understand.

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Paradyning · 23/01/2019 13:45

What is not normal? The NT thickness or the combined result?
If your NIPT came back low then that's more sensitive than the NT test anyway.
Unless they are thinking it's a flag for other abnormalities rather than just Edwards, Downs and Pataus.
Have they said what they are worried about?

Megan2018 · 23/01/2019 13:47

The NIPT is more accurate than the measurement - the measurement on its own is meaningless.
They said it was borderline - which it is. But thew bloods say it is fine. the bloods are what matter here.

Honestly, this is not about the test results - you are having an abnormal anxiety response. Please speak to someone about your anxiety - that's the thing that will help you.

No random on the internet can guarantee you that your baby will be fine - if you won't believe the 99.5% accuracy of the NIPT then you aren't going to believe what anyone on here says either.

costacoffeecup · 23/01/2019 13:47

NIPT is 99% accurate. You said it came back negative? So what are you concerned about? Sorry I'm a bit confused!

brokenhead · 23/01/2019 13:48

Yes a lot of health care professionals are really ridiculously blasé about life changing situations and it's infuriating
Ring the office and say

"I am so worried about my results. Please explain why your colleague has suggested termination. Is this a normal procedure?"

I was told my baby had its intestines outside of its body....
Can you imagine

Then I was told it was normal for that gestation but the damage was done I was a wreck for three weeks waiting for the 12 week scan when the sonographer changed their mind from 1.8 to 2.5 for the translucency right at the end of the scan
No blood results sent to me and a midwife on annual leave for three more weeks

I got a text saying "all normal no increased risk" last week when I asked

I expect better from everyone

I feel your pain.

Willow1992 · 23/01/2019 13:49

Hello Pookie, I was given a very high risk result (1 in 5) for downs from my 12 week screening. I also had an appointment with a specialist midwife who explained our result and all of our options. I was offered amnio on the NHS but like you was so worried about the miscarriage risk so I went for the NIPT privately. I got a negative result which was a huge relief, the wait for the test and the week to get the results were horrible, I couldn't stop thinking about the worst case scenario and I think I had a good cry every day!
Did you not feel relieved by the NIPT result? I know that they call it a screening test but when you look into how they get the result from the baby's DNA I always got the feeling that this is more for legal reasons? They are extremely accurate.

Original poster

pookiedoll · 23/01/2019 13:49

@Paradyning

The NT thickness was 2.4. The NIPT came back negative. She told me baby could have birth defect. I asked her specifically what and she said heart disorder she said it could range anywhere from a hole in the heart to major heart issues that would require surgery. She said the 16 week scan would show if there are any heart abnormalities but only issue with waiting is termination could become more problematic that far down the road. I told her I would not be terminating for a heart problem! Only for down syndrome.

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ChariotsofFish · 23/01/2019 13:51

The NIPT is so much more reliable than a high side of normal nuchal fold. What were your PAPP-A etc results like? Is it possible to call your Dr back and discuss exactly what the risks are? It seems so unlikely that they would have been so negative with your NIPT test result available.

KTD27 · 23/01/2019 13:52

Your NIPT came back negative! That’s great news. My high risk consultant didn’t even want to do my 12 weeks combined bloods because I’d had my NIPT back (after a previous TFMR)
Is there a way you can contact your doctor and ask them to talk you through their comments? I don’t think you’ve got anything to worry about but I know how hard it is to believe that when you think something might go wrong. for you x

Willow1992 · 23/01/2019 13:52

Sorry just read your update that you are also worried about heart issues!

HTKS · 23/01/2019 13:54

Cut off here in UK in terms of being worried about the NT on it’s own is 3.5 mm. Your measurement wouldn’t even raise an eyebrow here.

My job is dealing with this stuff (not a Dr). I have had plenty of women with NTs of 5 or 6 mm and their babies have been absolutely fine. Conversely I’ve seen women whose babies have DS and other trisomies with an NT in the 1s or low 2s. NT is a screening test, it identifies women at higher risk. The NIPT is the next level of screening and that has not screened positive for you is therefore you’re at the end of that journey. You have no need to be anxious.

Original poster

pookiedoll · 23/01/2019 13:59

@brokenhead

yea i don't even understand why she would discuss termination with me if it wasn't a reason for concern. I go to a high risk dr. for my sonograms and I see a regular ob/gyn for everything else. I am waiting for my next appointment on 2/1 with the regular ob/gyn to get some insight from her.

@willow1992

yes i'm concerned about the heart disorder but also concerned about why termination was discussed at all.

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Original poster

pookiedoll · 23/01/2019 14:05

@HTKS

maybe the cutoff in US is different. She told me 2.2 is normal and 2.4 is borderline/high.

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costacoffeecup · 23/01/2019 14:05

I don't think anyone can answer as it makes no sense at all. This was definitely after the NIPT results I take it? Has she missed something or read them wrong?

costacoffeecup · 23/01/2019 14:07

Honestly, I have a baby due tomorrow and haven't had NIPT plus I'm 38 so realistically there's probably more chance my baby had a chromosomal abnormality than yours because you've had a negative NIPT. It really hasn't crossed my mind at all to worry about it and no doctor here would even mention it.

Original poster

pookiedoll · 23/01/2019 14:08

@costacoffeecup

yes it was after NIPT results. I honestly don't know. I think my best bet now is to wait to see my regular ob/gyn who I know better and can discuss it with me in further details as well as wait until my 16 week scan to see what's going on. I'm just worried. A part of me thinks everything is ok from what everyone is saying but when a dr. discusses termination it really makes you wonder....

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costacoffeecup · 23/01/2019 14:11

Quite frankly she sounds completely bonkers. Yes speak to your regular doctor about it and I'm sure they'll reassure you.

Original poster

pookiedoll · 23/01/2019 14:16

@costacoffeecup

that's how i feel too! this is all new stuff to me. I never knew what an NT scan even entailed before yesterday. When she mentioned termination I said I'm not terminating over a heart condition!!! But after I got off the phone it got me thinking maybe people commonly terminate over a heart condition or maybe shes thinking could be DS. She just had my mind running... That being said I'm not going back to this dr. anymore...

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Willow1992 · 23/01/2019 14:26

I am surprised she mentioned termination as well. When we had our initial appointment to discuss our high risk we were told about the risk of a heart defect but were told in a positive way all about what could be done, higher life expectancies and higher quality of life for people with downs BEFORE telling us about termination options. This was before having the NIPT done, and since then no one has ever mentioned termination, just congratulated us on the good result! It sounds like she has been a bit insensitive and worried you unnecessarily. Is there any other medical professional (I don't know the US system too well) you could see to discuss your result and hopefully give you some peace of mind?

Original poster

pookiedoll · 23/01/2019 14:36

@Willow1992

yes i agree she was very insensitive in my opinion. And she told me all this as I was laying down with gel on my stomach. I wouldn't normally be this particular but she could have at least sat me up to have this discussion. She said it quickly too. When I left I wound up calling her with more questions b/c I left so confused. That is when she discussed the termination. I'm high risk as it is. I have lupus and cardiolipin and give myself Lovenox injections daily to prevent blood clots and then she throws all this into the mix. And yes I see my regular ob/gyn next week and I think she will give me peace of mind or at the very least explain things in a better way. I won't be going back to her.

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