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Support Group for High Risk NT Results #43

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#101 starcat

Posted 25 August 2013 - 12:23 AM

What a horrible week Jacksmummy4 and on top of the stress that you're already trying to deal with :no: Hoping Monday brings good news :pray:

#102 Jacksmummy4

Posted 27 August 2013 - 07:29 AM

Thank you ladies. It has been a garbage week. And just to add to the fun we had another thing happen with a close family friend. No one was going to tell me because of the stress we were already under, but I'm glad they did.

So I go my call about 12pm. And the quick results show that the baby is fine. I was lucky enough that our baby was one of those 23 chances. They did mention that my blood was in the sample, which may have affected the gender results but the specialist said that because there was only XX chromosomes coming up and no XY at all, he is 100% confident that its a girl.

We now have the Morph scan in two weeks, then we have to go to Sydney for the baby to have an Echo on her heart as apparently high NT results can also show heart problems? Has anyone ever had this? So in the clear for one, But now waiting till 22 weeks for the Echo. I am much more confident now and can finally stop crying.

You guys have been amazing. The support you all have with each other is so hard to find in these groups xxxx

#103 suline

Posted 27 August 2013 - 11:24 AM

Jacksmummy4 Im really glad you have had some good news this week x

#104 starcat

Posted 27 August 2013 - 04:49 PM

I'm so pleased for you Jacksmummy4! Now you can start to breathe again and enjoy that little baby of yours :babygirl:

#105 Justaduck

Posted 27 August 2013 - 05:08 PM

View Poststarcat, on 19 August 2013 - 05:37 PM, said:

Hi ladies, I apologize in advance for continent hopping (I'm a Brit but live in Italy) but after days of scouring the internet for support, advice and positive stories regarding high risk NT results I came across this forum and have spent hours reading through posts dating back to 2011 Posted Image They have given me some comfort since picking up my NT results a week ago that have given me a 1:48 risk for T21.

I'm 38 tomorrow but we had a really good 12 week scan where everything was looking perfect and so despite my age, I really hadn't thought that there would be any problem - I also stupidly announced it to everyone after the scan which I am just kicking myself for now

Anyway, our results came back as:
NT 2mm
Free beta hcg 3.77
Papp-a 0.85

The nasal bone wasn't commented on but I can clearly see it  in the eco pictures that were taken.

My risk from the scan alone was 1:357 but my off bloods have put my risk right up. I know that they like the bloods to be around 1 and my free beta is way too high but other than the risk of Downs, I can't find much info as to why this would be high otherwise and my OB wasn't able to (or didn't want to) shed any more light on this. I have 2yr old DD and my blood levels with her were perfect, despite being 35 at the time

I was offered a CVS but decided instead to have the non-invasive bloods done and I'm now in limbo as the horrible 2 week wait for the results is underway - and knowing that if I get a positive from them I will then have to have an amnio is just making me more stressed.

It's a horrible, horrible situation for anyone to be in and whilst I want to stay positive, I'm finding myself imagining and going through the worst case scenario all the time just so I'm prepared for it Posted Image

Thanks for listening.

Hi Starcat, if you read back to 2011 you probably already saw my story with DD. My bloods with her were Hcg 6.01MoM (and nothing I could find anywhere had someone with bloods that high, let alone that high and no issues) and I think Pappa was around 0.8MoM. We opted to not do a cvs/amnio due to the risk (her risk of t21 was 1:207) and the new blood screening wasn't around back then so it was a very long 27wks til her birth to find out for sure.
We got her chromosomes tested at birth and she is 100% chromosomally normal.

This pregnancy my blood levels were around the same as yours this, no nasal bone noted (but as clear as day at my morph scan) however possibly due to my age (25) my risk is 1:1100ish (for some reason better than age expected of around 1:927). Obviously I haven't had bub yet, but as far as they are concerned there is no reason to be worried, and the good morph scan has reduced my risks to 1:3300.

They have no real explanation for me either as to why it happens, just that my hcg is likely to be elevated in all future pregnancies. I do know that higher hcg can be linked to growth issues (although DD was measuring 4wks ahead at a 32wk growth scan) so you may get another scan or two down the track

Just wanted to give you a positive story and one with similar blood work to help you through the wait. Hope you get clear results

#106 starcat

Posted 27 August 2013 - 05:18 PM

Thanks Justaduck, I did read your story - possibly twice now :blush: - as it was one of the few that mirrored my values, although your Bhcg was obviously even higher than mine is. I've found so few stories where the problem is high bchg but relatively 'normal' papp-A levels - I'm trying to tell myself that 0.85 is almost 1 :whistle: I know that only time will tell and I'm even more stressed at the mo as the results should arrive any day now but  it's stories like yours that have helped me make it through these last 2 weeks without completely breaking down!

Thanks again.

#107 Subbie

Posted 28 August 2013 - 08:04 PM

Great news jacksmummy4 :) I also had 4.5mm nt, my risk was 1:2 but chromos were normal. I've had a fetal echo at 16 wks, 20 wks and I just had another 2 weeks ago at 28 wks. All scans were normal heart good and structural ultrasounds were good. There's only a small percentage that have congenital heart defects minor or major.  Good luck with your upcoming scans x

#108 Liz75

Posted 28 August 2013 - 09:37 PM

View PostSubbie, on 28 August 2013 - 08:04 PM, said:

Great news jacksmummy4 :) I also had 4.5mm nt, my risk was 1:2 but chromos were normal. I've had a fetal echo at 16 wks, 20 wks and I just had another 2 weeks ago at 28 wks. All scans were normal heart good and structural ultrasounds were good. There's only a small percentage that have congenital heart defects minor or major.  Good luck with your upcoming scans x

Sorry lurking but this is close to heart. With my first, my NT was 6.5mm. I was 32 at the time so odds came up as 1:10 with bloods, 1:5 without. Very scary. We had an CsV on the spot and results came back normal.

It was a difficult time for us as our friends have a Downs child, who we love. But we also knew how difficult it could be.

We went for the echo scan too at 18weeks and everything was perfect. We also had short long bones. This meant the whole pregnancy was riddled with fear.

I now have a 4 year old child who is perfect. He is short like me. My second child takes after his father and was 4.7kg at birth and 59cm. NT measurements were perfect. Two years apart they are almost the same size.
This just proved to me that genetics play a massive part in NT measures so while they can be a marker for a genetic problem. They can also just be differences between the parents physical attributes.

Good luck

#109 sparky17

Posted 30 August 2013 - 11:15 AM

I thought I would quickly post that we got the all clear on Tuesday for T21, T18, T13. What a relief! I won't bother with a lotto ticket cause our luck has been used up. Then yesterday I go for a shower and find I am covered in a bright red rash! Got into Dr immediately and found I have a contageous viral infection. What more can go wrong? Still have another week till get the full results from CVS.

Thinking of everyone still waiting in results and thanks for good wishes.

#110 starcat

Posted 01 September 2013 - 08:33 PM

Our bloods from the Harmony tests came back on Wednesday and we are that 1:48, testing positive for T21 - we are devastated beyond belief.

To make matters worse as the new non-invasive bloods are not considered 100%, I'm having to wait almost a week for an amnio and then it will be another 2 weeks for confirmation of the diagnosis. It is simply heart breaking.

We have already decided to terminate the pregnancy but we have to wait a further 2/3 weeks before we can now move forward with it - I'm not even sure how I'm going to make it.

I wanted to update and thank you all for your support, this is a wonderful group and so many stories have positive endings, ours sadly is not one of them.

#111 Marigo1d

Posted 02 September 2013 - 11:36 AM

Oh starcat, my heart is breaking for you. I feel your pain.
Hopefully you can stay busy so the next weeks seem to go quicker and then you can get the quick results from the amnio.

Lots of Posted Image
I hope you have heaps of support around you. Stay strong.

#112 Jacksmummy4

Posted 03 September 2013 - 05:41 PM

I'm so sorry to hear that Starcat. It's one of the hardest decisions to make. I hope all goes well with the Amnio and it's just a big mistake :(

Like Marigold said, I hope you have lots of support around you xxxx

#113 starcat

Posted 04 September 2013 - 02:06 AM

Thanks Marigo1d and Jacksmummy. I had the amnio this morning and all went well, if anything can be described as 'going well' at the moment. The doctor that did it, who'd also done my nuchal one, couldn't believe that I've tested positive for T21 as my scan again today was perfect with no markers at all - it's little consolation at the moment unfortunately :no:

Whilst I would love to think I was one of the few rare false positives, we have accepted the reality of our situation and are handling it day by day and often hour by hour.

Thank you once again xx

#114 Subbie

Posted 05 September 2013 - 08:43 PM

I'm so sorry starcat...is there a chance that perhaps the cells are just confined to the placenta?..hoping this time goes quickly for you...I cant imagine how you must be feeling...praying for a miracle for you x

#115 starcat

Posted 05 September 2013 - 09:15 PM

Thanks Subbie. Unfortunately I think that cases of it being just confined to the placenta are so rare that I can't even imagine that we could be one of those lucky casesPosted Image I only hope that the results come back within 10 days at least and not the original 30 that they first said.

#116 WorriedMum2013

Posted 06 September 2013 - 12:00 AM

Starcat, I'm so very sorry to read your devastating news. I saw your results and certainly compared to many others they didn't seem too severe.

I'm an older graduate from this group.... Everyone here really helped me get through the waiting & dread. I had horrible blood results, low NT measurement and I'm a reasonable young mum, so needing this group was a shock. I lurk around.... To see how others are going!! I just wanted to pop in and let those older followers know that despite a very difficult beginning to this pregnancy, things have been going very well! I have a normal sized baby that looks healthy & a placenta that is so far hanging in there. I've been on aspirin since around 16 weeks, due to very low pap a (.18MoM). I'll be 35 weeks tomorrow.

I hope all those struggling with difficult decisions, long waits & living in dread get answers soon & clear results. I know that wait feels like a lifetime & more often than not (fortunately) things do work out. Rely on your family & close friends, vent.... Do anything that keeps your mind off things. *hugs*

#117 LMD80

Posted 09 September 2013 - 10:19 AM

Hi, I have only just been able to post this morning. I did the NT scan on thurs and received a high measurement of 3.6mm. This obviously came as a shock and was completed at the OB's office. I then went to a specialised place for another scan and then CVS, the second scan was just as concerning! I have a 1 in 2 chance of Trisomy 21, 1 in 98 for Trisomy 18 and 1 in 90 for Trisomy 13.
The nasal bone and tricuspid regurgitation were also absent.
Free beta -hcg 36.090 iU/I, equivalent to 0.8680MoM. PAPP -A 0.830 IU/I, equivalent to 0.5474 MoM.
I am assuming if I get the CVS results back today that my chances are very low for a positive outcome?

#118 LMD80

Posted 09 September 2013 - 03:40 PM

Before anyone has read the post above, I'm happy to report back I was the 1 of 2 without chromosome issues. Fsh results are in! There may still be something come up later but the OB was happy!

Edited by LMD80, 09 September 2013 - 03:40 PM.

#119 Subbie

Posted 14 September 2013 - 11:07 AM

Great news lmd80....know how that feels getting a clear result after an initial 1:2 result...hope you can enjoy the rest of your preg......STARCAT thinking of you hope there is some miracle x

#120 LMD80

Posted 20 September 2013 - 08:11 PM

Thanks, did your baby have any other issues? I still haven't had the full results back yet which makes me a little nervous. And will have 4 weekly scans to check everything.
I'm shocked to hear not only on here but from friends how many have gone through this, mostly resulting in healthy babies!

#121 Subbie

Posted 21 September 2013 - 12:23 PM

No I've had bout 4 very detailed scans fetal echo and structural u/s lmd80 all normal....I'm due now in 5-6wks. Baby's growth tracking normal too.

#122 LMD80

Posted 24 September 2013 - 02:14 PM

Thats excellent news! I got the full results and all is fine from the CVS. Goodluck with your birth!

#123 ~A2~

Posted 30 September 2013 - 09:28 PM

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