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HIGH NT AND FREE BETA HCG!!

41 replies

sabrixx · 14/02/2024 14:20

Hi everyone,

I had my first scan last week and the midwife said everything looked fine with the baby but the NT fluid was a bit high (3.5mm).

They sent me for blood test and I got my results yesterday:

Free beta hCG - 3.88 MoM
PAPP-A - 0.94 MoM

She said im high risk for down syndrome (1 in 2 chance) so I will have my CVS next week.

Did anyone else have similar numbers and risks? How did it turn out?

I’ve been crying and next trying to be positive since yesterday but it is actually hard as I don’t know what’s going on.

I would love for anyone to share their story and let me know how you dealt with it.

OP posts:
sabrixx · 27/02/2024 22:44

@linz1987 14 days from the day I had my CVS but they don’t count weekends so it’s longer than two weeks.

OP posts:
Nazkim · 28/02/2024 20:31

@sabrixx thats is great news! I understand ur worry due to still having to wait for the full array.

Just wanna update on my situation aswell, i did an Amnio on Friday and got my first sets of results back which is that the they are clear for Down/Patau and Edward syndrome. I also still have to wait for the full micro array which will take 2-3 weeks.

I am happy but not fully able to celebrate this news cos have to wait for the full results.
i think i will be able to relax abit when my anomaly scan is all fine.

I hope for the best outcome for everyone. X

bord · 29/02/2024 09:37

I'm so pleased that you @sabrixx and @Nazkim have had positive first sets of results. It sounds like your scans were reassuring too so hopefully it's all a really good sign you've got healthy little babies in there.

@Skyland24 - keep us updated with how it goes. It is a really awful and scary time. Have you managed to contact ARC as suggested by someone else up in this thread? They are really lovely.

Skyland24 · 29/02/2024 17:31

@bord i don't live in the UK. Im waiting for results and praying my heart out to god almighty. Will surely keep you update

sabrixx · 04/03/2024 19:44

Skyland24 · 27/02/2024 07:28

My NT was 5.1 and Double marker has been horribly wrong.

HGC 30.5
papp-a 1.15
T21/ T13 and T18 all have come positive in the above test.

I have been advised to do NIPT which was done yesterday 26th but im getting so rest less. Im unable to concentrate on my work. I cannot take off from work as well. Im so stressed and scared. This has been the worst I could ever go thru in my life.

Im hoping my NiPT comes all clear. I can only pray and rest is gods wish. Can some one advice the ration on criticality in these resports.

hey, just thinking of you!

Did you get your results? hope everything is fine x

OP posts:
sabrixx · 05/03/2024 16:03

linz1987 · 27/02/2024 21:05

Fantastic news! So pleased for you. I know what you're saying about the relief but also still worried!

I was hoping the rest of results would take 2 weeks in total (it's been over 2 weeks since my amino now) but you've been told an additional 2 weeks from today?

Hey,

Just thinking of you. They called me today to let me know that the second sets of results are clear too.

I hope you get your results sooner than 2 weeks.

OP posts:
linz1987 · 05/03/2024 23:53

What a relief for you!

Still no results, it's been over 3 weeks now. I rang last Thursday and they told me the lab have the results but they have to be double checked by another specialist before they are sent. Rang yesterday, nothing. Rang today and was told they are still waiting for them so obviously them telling me they were waiting for them to be sent over last week wasn't the truth. Not really sure what is holding them up surely another specialist could have checked them by now. Making me feel doubly anxious. They have told me it should be tomorrow but not holding out much hope.

Nazkim · 08/03/2024 22:43

Hey @linz1987 any update??
I called fetal medicine today as its been 2 weeks since my amniocentesis and wondering if the micro array results are back but they checked with lab and said they need to culture the cells further and it might take at least another week.. I hope all is okay, so stressful. I have my 20 weeks scan booked in 2 weeks aswell.. :(

@sabrixx did you have a cvs done amnio! And how long did it take them to give u the array results from the procedure?

sabrixx · 09/03/2024 00:27

Nazkim · 08/03/2024 22:43

Hey @linz1987 any update??
I called fetal medicine today as its been 2 weeks since my amniocentesis and wondering if the micro array results are back but they checked with lab and said they need to culture the cells further and it might take at least another week.. I hope all is okay, so stressful. I have my 20 weeks scan booked in 2 weeks aswell.. :(

@sabrixx did you have a cvs done amnio! And how long did it take them to give u the array results from the procedure?

hey! I had cvs done on the 22nd of Feb (Thursday), got my first results on the 27th (Tuesday) and I got the second set of results on the 5th March, so a week earlier than expected.

I am sorry that you have been waiting this long, maybe it depends from hospital to hospital but please keep me updated!!!

OP posts:
linz1987 · 09/03/2024 00:41

It came back all clear yesterday morning!

The longest wait of my life!

linz1987 · 09/03/2024 00:44

Nazkim · 08/03/2024 22:43

Hey @linz1987 any update??
I called fetal medicine today as its been 2 weeks since my amniocentesis and wondering if the micro array results are back but they checked with lab and said they need to culture the cells further and it might take at least another week.. I hope all is okay, so stressful. I have my 20 weeks scan booked in 2 weeks aswell.. :(

@sabrixx did you have a cvs done amnio! And how long did it take them to give u the array results from the procedure?

Came back all clear. I was in my fourth week. They didn't say why they had taken so long. They said last Thursday that I'd get them on Friday because they just needed a second specialist to sign them off (apparently that's what happens with all results).

So waiting until Thursday morning this week was the worst wait ever!

Fingers crossed for yours.

sabrixx · 09/03/2024 10:55

linz1987 · 09/03/2024 00:41

It came back all clear yesterday morning!

The longest wait of my life!

Yayyyy, i’m so happy for you! When is your due date?

OP posts:
Nazkim · 09/03/2024 16:41

Ahhh thats amazing!! Happy for both @sabrixx and @linz1987 ❤️ I will keep you updated! X

Skyland24 · 09/03/2024 18:16

@sabrixx my NIPT was high risk. Since all the reports confirmed high risk we decided to Terminate the baby. Worst time in my life

sabrixx · 11/03/2024 15:02

Skyland24 · 09/03/2024 18:16

@sabrixx my NIPT was high risk. Since all the reports confirmed high risk we decided to Terminate the baby. Worst time in my life

hey, i’m so sorry you have to go through this.. wish i could give you a hug.

if you need someone to talk to, feel free to send me a private message! xxx

OP posts:
bord · 13/03/2024 11:43

Skyland24 · 09/03/2024 18:16

@sabrixx my NIPT was high risk. Since all the reports confirmed high risk we decided to Terminate the baby. Worst time in my life

This is the position we found ourselves in coming up to two years ago. It was horrible and extremely difficult to rationalise and come to terms with - even though for us it was the right decision. I am so sorry you are going through this.

There are some good forums around for "TFMR" (Termination for Medical Reasons). I realise you said you aren't in the UK but ARC has a forum specifically for this which you may still be able to access - you just need to ring or email them. Otherwise there is a lovely bunch on here if you search for TFMR who have also sadly been in the same situation.

Wherever you are, see if you can access some form of counseling. It really is worth doing to make sense of how you must feel right now. Sending lots of love x

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