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Support Group For Hi Risk NT Results #37


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107 replies to this topic

#1 ~A2~

Posted 24 September 2011 - 08:54 PM

Hi all

New thread time

Previous thread

Regards

Ali

#2 sarkazm76

Posted 24 September 2011 - 08:57 PM


Good luck Rosie.  

Been pretty quiet here lately - hope everyone is ok original.gif

#3 RosieTea

Posted 25 September 2011 - 09:59 PM

Thanks Sarkazum... My cousin had a baby last week so relieved he was born early so it doesn't co-inside with my fish results


#4 Maz72

Posted 26 September 2011 - 10:43 PM

Hello again all you wonderful ladies

I always need to start with giving thanks for all your thoughts and wishes.

RosieTea all the best for tomorrow.  Do you already have an idea about what you will do with possible results?  Hopefully you won't have to go there, but be kind to yourself if you do get unwelcome news.  It meant a lot to me to take all the time I needed to make the best and most comfortable decision for us.

Broncosbabe I hope you can find some peace with all the stress involved knowing your results are out of normal range.  Is it worth considering more testing if it might help you to relax, rather than be so anxious throughout the rest of the pregnancy?

tintin22 I don't think there are any other non-invasive tests to actually confirm a diagnosis.  I don't know of anyone miscarrying after amnio - but the statistics are there - so they must happen.  I can fully understand not wanting to risk it.  I know I was willing to take the chance with our risks (and only one baby), but it is different for you.

Belinda33 - good to know you feel this pregnancy is OK.  I don't think I ever felt mine wasn't.

AFM - I had my beautiful little boy last Thursday morning after only about 3.5 hours of actual labour.  It was lovely and peaceful.  I delivered him, we had just over an hour with him, and he left us while my husband held him.  RIP little man.  It is heartbreaking, and sometimes I still can't believe we have done this.  But I don't feel him kick anymore; my pregnant belly is going down; and we are faced with making "arrangements".  It is a relief, however, not to be faced with making that decision anymore.  Whilst I took all the time I needed, it was incredibly draining, physically and emotionally.  At least now we have entered the next phase and can concentrate on creating what memories we can.  Without my gorgeous 2yo son, I honestly don't know how I would be coping.  He constantly amazes and delights us.

For those considering following our path, I would urge you to take a look at the SANDS website - it's got masses of information for both before and after taking any action.  I also used a photographer to get some professional photo's taken - Heartfelt is the organisation if anyone is interested.

#5 boomoo

Posted 27 September 2011 - 10:56 AM

Hi Rosie Tea here (on my other computer)

I had my amino done today, I am sore in the area where the needle went in other wise fine original.gif

Hopefully will have the results back tomorrow they said with the FISH but I am holding on to thinking thursday to get the :Good : results back (gotta think Positive)

Maz72 - thinking of you during this difficult time xx

#6 boomoo

Posted 28 September 2011 - 02:33 PM

HI Rosie tea again

Just got the results back from my amino well the FISH anyway

ALL CLEAR

So many tears of joy ... Can't wait to meet our little prince/princess in March now feel like I can start bonding with them now

THanks for all your support
Paula

#7 anon1317

Posted 29 September 2011 - 09:00 AM

Hello everyone,
I was hoping to join you all in here for some support and advice. I am a long time member who had gone anon, as I dont want anyone knowing what we are going through at the moment, so it is easier this way for me.
My background.
I suffer from re-current miscarriage, have had all the tests including genetic/chromosomal and everything is clear, no reason for losses. I am 25 and just over 13 weeks pregnant and found out this week we are high risk. So my results are
Trisomy 21 1:61
trisomy 18 1:1268
trisomy 13 1:4032

T13 and T18, dont sound too bad, but are double what they should be for my age.
The NT measurement was 3.5mm
bHCG was 1.310
PAPP-A was 0.820

To be completely honest I dont really know much about the bloods side of things, only a little from googling.
DH and I are booked in for genetic counselling next week to see where to go from here. We are thinking at this stage to do further testing, and see exactly what is going on.

Sorry to lump all of this on everyone, and I am even more sorry you are all going through the same thing  bbighug.gif

#8 boomoo

Posted 29 September 2011 - 11:28 AM

Hi Anon1317

With my ds1 we had a NT measurement of 3.2mm so just under yours.

Your bloods aren't that bad to be honest. Usually from the research I have done (don't take it as gosple) your hcg levels are high like 2 or more and your papp-a is really low .

My amino was done on tuesday, they did a scan before the procedure to check the positioning of bub then they put a solution on my stomach to ensure it was clean and the procedure took about a minute.  There was a sharp sting, like when you have an injection and then it was just uncomfortable as they were pushing down hard with the ultrasound wand.

I organised FISH results which cost $175 and I had the results back the next day.  The procedure was done at my hospital so no costs

Please let me know if I can give you any more details

Best of luck

#9 Guest_chocmudcake_*

Posted 29 September 2011 - 12:03 PM

...

Edited by chocmudcake, 29 September 2011 - 12:16 PM.


#10 anon1317

Posted 29 September 2011 - 12:13 PM

Thank you for your reply boomoo.
I thought the same about the bloods, from what I have read also. But its all so confusing and at the moment confronting too.

Did you have an anaesthetic before the amnio? I have read in some instances it is offered. I am so scared of needles as it is, but will do what needs to be done. I guess I can only really wait until Tuesday to see the genetic counsellor and go from there. I just want to know the results and what is going on.

Thank you so much for taking the time to reply. Best of luck with your final results.

#11 boomoo

Posted 29 September 2011 - 02:59 PM

Anon1317 - no I didn't have an anesthetic with it. I closed my eyes and wiggled my toes.

Most of the time they don't offer anesthetic cause the needle is so fine..

Where are you based??

#12 Maz72

Posted 29 September 2011 - 08:02 PM

Anon1317 - I didn't have local with amnio either.  The Obstetrician said sometimes it can make the amnio a little more difficult as the thickness of tissue to pass through is more with the local.  My procedure wasn't too uncomfortable, only about 1 minute or less, and it hurt most while they removed the needle!  Probably best not to worry too much about the actual needle.  If you really need to know what's going on, you'll be greatful for the peace of mind that knowledge may bring.  Good luck with your counselling.

#13 Ards

Posted 30 September 2011 - 05:39 PM

Anon - I'm having an amnio on tuesday I can let you know how it goes.

AFM - testing day is nearly here ...tuesday is the big day  huh.gif I'm scared but can't wait to get it over with.

#14 sarkazm76

Posted 30 September 2011 - 08:48 PM

Anon - "normal" results for bloods are 1.0 each - so actually yours aren't that bad at 1.3 and 0.8.  I would imagine your risk is mainly due to the measurement.  I'm not sure if your history is taken into consideration in the results too.  Hang in there and the amnio will let you know for sure but keep in mind there is a LOT of false results in this testing.  I did have anesthetic when I had both my CVS and Amnio.  It just depends on where you are and what is their procedure.  I didn't feel a thing after the shot.


Thinking positive thoughts for you all.... sorry I'm trying to fight off a migraine so forming sentences that make sense is really hard right now so that's all from me for today original.gif


#15 anon1317

Posted 01 October 2011 - 08:07 AM

Thank you all for your responses.
boomoo, I am in Wollongong NSW

Maz, Thank you for sharing your experience. Everything I have read says it takes up to 1/2 hours, so only a couple of minutes makes me feel better about it.

ards, that would be great if you are happy to share your experience. Best of luck for tuesday.

sarkazm, Thank you for your kind words too original.gif

#16 Justaduck

Posted 01 October 2011 - 12:06 PM

Missed the start of a whole new thread somewhere
Maz - Thanks. I know nothing I can say to you will make things any easier for you at this time, but an certainly thinking of you.
As for invasive testing -  I would have put much more consideration into the invasive testing if I knew earlier how high my bloods were. As it was such a rush to send me to GP straight after NT test, the scan place forgot to put my scan results in with the photos. Didn't find out until after I saw the Ob at 16weeks that they were so high, and by then the time was so close to the Morphology scan that I figured I would just wait. That scan is on Wednesday (5th) so hoping to know with much more certainty then what we are up against. If the test hints in any way that there is an increased risk, then I will look at the invasive testing again.

GP said he would be much more concerned if my bloods were normal and NT scan was physically out - Had a nasal bone then, fingers looked normal, heart/brain/kidneys all appeared normal.

Boomoo - What a relief getting the all clear original.gif

Anon1317 - My background - I am 23. My results:
NT measurement: 2.1mm
T21 - Should be 1 in 1032, actual results 1 in 207
T18 - Should be 1 in 2599, actual results 1 in 51986
T13 - Should be 1 in 8132, actual results 1 in 162635

This is based purely on my bloods which were:
Free beta hCG - 235.700 (equiv of 6.0104MoM)
and PAPP-A: 2.190 (equiv .8845MoM)

To me (not knowing too much except what I have found on google) your bloods of 1.3 & .820 look pretty reassuring. I have found nothing much through googling bloods, except have found levels of 3 & under are pretty good. I would assume your elevated results are all from the NT measurement.

Best of luck to all getting testing done this week

#17 anon1317

Posted 05 October 2011 - 07:59 AM

Morning everyone,
ards, I hope your amnio went well yesterday.

We seen the genetic counsellor last night, he never really told me anything I hadnt already found out through researching everything. We had made up our mind before going that we would have the amnio and are now booked in for first thing Thursday next week. So still playing the waiting game.

Best of luck to everyone awaiting their results

#18 Justaduck

Posted 05 October 2011 - 09:18 PM

Just a quick post to say we had the morphology scan today. Everything appeared physically 'normal' which was a big relief, and because the 3 or 4 main things were 'normal' they were able to reduce the DS risk 3-fold, from  207 to 624, so much happier with that result.
Best of luck to those awaiting results and testing

#19 Ards

Posted 06 October 2011 - 05:11 PM

QUOTE (anon1317 @ 01/10/2011, 06:07 AM) <{POST_SNAPBACK}>
ards, that would be great if you are happy to share your experience. Best of luck for tuesday.


Well anon I cant share my experience as I didnt end up getting the amnio done. We met with the ultrasound doctor & we decided the scanning look perfect and even she reckon the risk was not worth it. At my 20 week scan I will have a very detailed scan again to make sure there are no markers visable.

Good luck for you test xx

#20 MaryQR

Posted 11 October 2011 - 02:39 PM

Hello everybody,
I just had my NT test and received a high risk result (1:179). The Dr. told me everything looked great and then had to backtrack when he saw my blood results (b-HCG: 3.480 and PAPPA-A: 0.520). I have no idea what these numbers mean but they have already caused a lot of tears  cry1.gif

Reading through everybody's stories have really helped put things into perspective. Everybody is so strong and there have been so many great outcomes.

Thinking of you all and thank you for making me feel that I am not alone in this.  hheart.gif

#21 anon1317

Posted 11 October 2011 - 02:49 PM

Hi aprilbaby2012,
I am really sorry you find yourself in here. I only joined last week too:( Are you going to have any further testing or have the dr's said what they want you to do from here? It is such a stressful time and I really understand what you mean about the tears. If you need to chat, I am here.

#22 MaryQR

Posted 11 October 2011 - 03:26 PM

Hi anon1317,

Thank you for such a fast reply. Im waiting for my OB to call me to discuss the results (and tell me what my next move should be).

Unfortunately, my DH is currently deployed in Afghanistan and I dont know when I'll get to talk to him next. Makes things a bit tricky.

How are you coping? Im trying to find the balance between staying positive and preparing myself for any difficult decisions that I may have to make. Wouldnt wish this on anyone.

#23 anon1317

Posted 11 October 2011 - 03:43 PM

No worries, helps to have people to talk to original.gif

I am sorry to hear your DH is deployed at the moment, it must be extra tough on you not having him there  bbighug.gif

Im not really coping to be honest. We have suffered re-current miscarriage, although very lucky to have one child. This was and still will be my last pregnancy. I had genetic counselling last week and DH and I decided to go for the amnio, we would rather know what is going on and make an informed decision if we need to. I keep having nightmares about everything, it is constantly on my mind and I feel like the couple of people irl that do know, dont know what to say or dont want to talk to me about it. It seems all to hard for them. I know they probably dont want to bring it up and upset me, but not talking about it and pushing it under the carpet is making it worse for me. I am seeing a psychologist from the end of the week to try and deal with everything, so hoping she can help with everything.

Big hugs and I hope you can talk to your DH soon

#24 sarkazm76

Posted 12 October 2011 - 09:40 PM

Hang in there ladies - this period of waiting really is the worst.  What I most of all hated was everyone saying "oh it will be fine" like it was nothing.  "There won't be anything wrong".

Always made me feel worse.  I'd much rather be asked how I'm feeling and sympathised with then having everyone carry on with blind optimism completely not backed up by ANYTHING other than their own inability to deal with it.

Anyway... that's why groups like this help so much.

Anon - I think counselling is a brilliant idea.  I wish I had seen my therapist at the time I went through this (I didn't start seeing him again until the end of the pregnancy) because I really did have trouble re-connecting to the pregnancy.  After having to contemplate that you might lose them it's really hard to relax/ let it go and concentrate on looking forward to bubs arrival.  



#25 ~Sh3ekY M0nKeY TaMeR~

Posted 12 October 2011 - 10:31 PM

Hi girls I was a 1:27 risk and now have a perfect healthy 6 month Old baby girl, I'll post more tomorrow.




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