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Support Group for High Risk NT Results ~ # 27

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#1 lilymurray

Posted 02 February 2010 - 08:49 PM

New thread time ladies original.gif
Link to previous thread

#2 batgirl

Posted 03 February 2010 - 09:28 PM

Just thought I'd let you know that they weren't able to do the CVS again today - apparently my placenta is in a tricky position at the back. So I may have to wait another 2 weeks until they can do an amnio.

I'm not sure how I'll be able to stand the wait ddown.gif I just feel sick to the stomach all the time.

#3 jules12

Posted 04 February 2010 - 08:50 AM

batgirl I'm so sorry this has happened again to you. sad.gif The waiting is so hard. bbighug.gif

#4 summerbub

Posted 06 February 2010 - 07:24 AM

Hi Everyone,

Unfortunately I belong in here cry1.gif

I had my NT scan yesterday which was beautiful and perfect - then the bloods came in.... my bloods were not good at all in relation for Trisomy 21 (Downs Syndrome).

So my background risk was 1:759 for my age (28.5)
Ultrasound risk was 1:3794
Biochemistry risk was 1:29 cry1.gif
So my adjusted ris is 1:149.

Breaking down the bloods:
My Free beta hCG was equivalent to 4.2900 MoM
My PAPP-A was equivalent to 0.600 MoM.
Apparently these two number should have been really close together... like both of them should be 1.2 MoM or something.

I have booked in for an amnio for the top guy in Brissy on the 22nd - I will be 15 weeks along then. This guy does an amnio from 14w+4d onwards.

On the upside, my OB studied my scans and my bloods, called me in and said that he was confident that my bloods were just 'off' for some unexplained reason. Apparently it happens... he said my scans were beautiful and there was a nice thin Nuchal fold (1.31mm), all body parts were in proportion so I'm sort of hanging on to this opinion from him.

I can see there isn't much traffic in here at all - is there somewhere else that everyone posts or are we just a tiny tiny group?

Batgirl - I understand how you are feeling with your CVS. This was an option for me yesterday but I have a retroverted uterus and my bowel was in the way so there was no way I could get the CVS done. I had booked in for a CVS next Monday in the hope everything moved around, but then my OB suggested that I waited a few more days and get an amnio.
I hope that you get to have your CVS or amnio soon so that you can get some answers. Until then I am here to support you as well original.gif

I haven't seen any more posts so sorry to everyone I have missed.

- Robyn.

#5 batgirl

Posted 06 February 2010 - 03:33 PM

Hi Robyn, I'm sorry you are here. I had similar results to you for my first pregnancy, had the amnio and everything was fine. My DD is now 5.5 years old original.gif

This time things are different as in addition to bloods similar to yours my nuchal fold is huge! you can actually see if buldging on the scan - I think they said it was 12mm  ffear.gif sad.gif. So there is definately something wrong in my case - they just don't know what yet.

The wait is killing me cry1.gif

I'm still popping in here regularly - I just don't have anything to add. They are going to try for CVS again on monday and if my uterus hasn't tilted I have to wait another 10 days for amnio. I feel sick all the time and I can't function. The only "good" days I've had are where I've been able to throw myself into work for distraction (but I only work part time). I highly recommend distraction to keep your mind off things.

All the best.

#6 summerbub

Posted 06 February 2010 - 07:24 PM

Oh batgirl I'm sorry to hear your story. How long ago was your scan? How far along are you now? I'm working part time as well - 3 days per week so I am sure that will make the weeks go a little quicker.

Unfortunately at the same time, I have Noah's first birthday party on tomorrow, so I have all these people arriving in the morning & they are sure to ask how the baby is coming along. I had guests due to stay here tonight and I asked if they could arrive tomorrow instead as I just want a quiet night and I want to go to bed whenever i like... rather than entertaining.

I hope you have a relaxing evening - where abouts are you from?

#7 roses99

Posted 10 February 2010 - 10:11 AM

Hi Batgirl, I'm so sorry about your wait. There are few things worse than the not knowing. I hope the amnio will go smoothly in two weeks.

And Robyn, welcome to the forum. Sorry you have to find yourself here :-)

My results were quite similar to yours. Perfect scan (same nuchal fold as yours) but the blood work was out which made our adjusted risk 1:135.

We opted to wait until the morphology scan before making a decision about an amnio. The morph scan was also perfect and, while it's obviously not conclusive, we're comfortable to leave things as they are and not go for the amnio. However, I completely understand people wanting to know for sure.

So that just leaves the bloods... There are a few things that can mess with the blood work, for instance your dates being out by even a few days. Also, there's good research that fertility drugs can mess with the results. And I've also heard that false positives are more common with girl babies than with boy babies!

I know it's easier said than done, but try not to worry too much and remember that your risk is still relatively quite low. As my GP would say, a 1:149 risk means you should only allow yourself to worry about it 1/149th of the time!

All the best, and let us know how your amnio goes


#8 summerbub

Posted 10 February 2010 - 12:21 PM

Thanks Jo

Funny you mention that, the sonographer said that she thought it was a babygirl.gif , but we weren't to hold her to it!

Batgirl, how did you go on Monday? Were they able to perform the CVS?


Edited by summerbub, 10 February 2010 - 12:21 PM.

#9 batgirl

Posted 11 February 2010 - 09:21 AM

Yes we had the CVS and unfortunately the news is not good. A combination of genetic factors and morphological problems identified on the scans has led to a diagnosis of "not compatible with life". I am having a termination tomorrow. We are shattered.

#10 summerbub

Posted 11 February 2010 - 02:06 PM

Oh Batgirl, I am so so sorry to hear your news cry1.gif I am thinking of you, and will continue to do so throughout this tough time. I hope you are able to get some 'me' time. sad.gif

I am at a loss for words, I'm so sorry.

#11 intd242

Posted 12 February 2010 - 12:27 AM

I'm very sorry to hear that Batgirl. I hope you and your DH have lots of love and support around you to help you through this ...

#12 jules12

Posted 15 February 2010 - 11:06 AM

Batgirl I'm also so sorry to hear that.I am and will be thinking of you and your family.xxx

#13 roses99

Posted 16 February 2010 - 09:49 AM


I am so sorry about your news. I will be thinking of you and your family as you grieve the loss of your precious little one. I hope you have lots of loving support around you.


#14 batgirl

Posted 16 February 2010 - 02:28 PM

Thank you ladies. I wish you all the best with your journeys.

Robyn - thinking of you and hoping you are coping with the wait. Good luck for your amnio!

#15 tayloranne

Posted 18 February 2010 - 11:39 AM

hi ladies
im hear bacause i was told that mi baby may have trisimoney 18 ..
i didnt and havent had amnio as i was to far already when i was told .
now i am 3 weeks till baby due, and absolutly petrified...
im not sure what to think or do ?
as whan i was told i just went in to shut down moad and didnt bother with doc at all . now the fear is realy starting to take a toal..... oh god

Edited by tayloranne, 18 February 2010 - 11:42 AM.

#16 roses99

Posted 18 February 2010 - 04:47 PM

Hi Tayloranne,

I'm so sorry for the stress you're under.

What makes the doctors think your bub might have tri 18? Is it based on an ultrasound? Did you have an NT scan/blood test around 12 weeks. Did that show up anything about Tri 18?

I know there are people on these boards who have experienced what you're going through right now, and can give you an idea of what to expect if your baby does have that condition.

But let's hope the doctors are wrong and your bub is perfectly healthy!



#17 roses99

Posted 18 February 2010 - 04:48 PM

Hi Crumpet10,

Just checking in to see how your amnio went. It was today, wasn't it? I hope you get the FISH results first thing on Monday and that you get the chance to relax over the weekend and not worry too much.



#18 roses99

Posted 18 February 2010 - 04:56 PM

Hi Tayloranne,

One more thing to remember, unless you've had a CVS or an amnio, there's no way of diagnosing Trisomy 18 in your baby. An ultrasound or bloodtest is only a screening test and can only tell you something about the odds of your baby having the condition. Even if your ultrasound has picked up a few soft or structural markers, this doesn't necessarily mean your baby has Trisomy 18.

Maybe, once you've had some time to collect your thoughts, you could make a list of questions for your doctor and get a bit more information on what's going on.

And, whatever you do, try not to google. You'll most likely just find worst-case-scenario information that will cause you more stress. Better to find some people on these forums who have experienced what you're going through and can offer some specific support!

All the best!


#19 summerbub

Posted 19 February 2010 - 01:36 PM

Hi Tayloranne,

Welcome to the group. I'm sorry you are in here too. sad.gif Jo has given you some great advice there.

When were you told that your baby might have Trisomy 18? Was it at your 20 week Morphology scan? I have everything crossed for you that your baby will be a happy and healthy one when it arrives.

Crumpet, how are you going? How was your amnio? If you feel up to it, I would like to hear if you thought it was better / worse than expected etc. I hope you are resting up

AFM - My amnio is on Monday. I really haven't thought much about it over the last fortnight, so I guess that is a good thing in a way. I have taken next week off work (I only work Tues, Wed, Thurs) so that I can rest, and then my OB appt is on Friday. He will check the baby to see if there is still a heartbeat. I can't wait for this to be all over and done with. I am thinking postively, though I have woken up a couple of nights in a row after having a nightmare that I had miscarried after the amnio. It must be playing on my mind after all.

Chin up ladies, I hope we get some awesome results in the next few weeks.


#20 nessed

Posted 19 February 2010 - 09:08 PM

Hi girls, its been very quiet in here lately.

Batgirl - Hi there, just wanted to let you know that you are not alone. I terminated my triploidy baby in October at 15 weeks (not compatible with life - had a CVS) so i know exactly what you are going through.  You can pm me if you want to talk.  It really helped me to talk to people who have also been through this. There is a great section on the forum for women who have terminated their angels and they are lovely group ( i think its in the miscarriage, pre-natal loss section).

Thinking of you...


#21 cire

Posted 21 February 2010 - 10:25 AM

Hello Ladies

So sorry to hear about your news, Batgirl
Thinking of you in this time of grieving.

I've been away for a long time due to moving countries and I didn't get to come back with my amnio results which we got in November. My risk was 1:98 and all is okay. We're having a lttle boy due on the 10th of April.

Wanted to say thanks for all your support at the time. It was so stressful. Thinking of all of you as you go through this stress

#22 nessed

Posted 21 February 2010 - 02:53 PM

Hi girls

Big news. I am pregnant!!! due 27th October. Early days yet, only 4weeks and 5 days (yes counting even the days). I found out this morning, got a BFP on the HPT.

I had thought i was for a few days, sore breasts were the big geiveaway.

Oh my gosh, after the heartbreak of termianting my triploidy baby in October, I am just blown away by this.  Will be back on here in a few weeks with all my 12 week testing, the OB wants me to have a CVS this time around as well. Not looking forward to that part.

Every cloud has silver lining even when its storm cloud.


DS1   Tadhg 7
DS2   Aidan 6
Angel   Charlotte 09/10/09

#23 summerbub

Posted 22 February 2010 - 06:05 PM

Hi I'm just popping in with an update.

I had my amnio this afternoon. It wasn't as bad as I had thought. I'm resting now.

My results will be back tomorrow afternoon at 5pm, so please please cross your finger for my baby and I.

#24 summerbub

Posted 23 February 2010 - 09:15 PM

Hi Everyone

It's so quiet in here that I feel like I am replying to myself  blush.gif

I got my amnio results back.........

My baby is perfect eexcite.gif And it's a babygirl.gif

Thanks for your support, I will be lurking in here from time to time hoping that everyone else gets good news too.

#25 xfactor

Posted 24 February 2010 - 06:35 AM

ph34r.gif  Great news summer bub !
Congratulations on a pink one original.gif

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