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Support Group for Hi Risk NT Results #41


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#26 Ral1

Posted 04 October 2012 - 04:01 PM

lkd2012: Good work!!  Thats excellent news. Im still praying that they had entered a wrong figure in the computer for mine. Or put in 1968 I was born instead of 1986.

Apples: I get pains sometimes if I turn to far or too quickly. I think this is all normal, Ive heard lots of people have these types of pains. And I hope the phone rings for you. I guess closer to finishing work would be better??

Cyaira: Well done! Thats great that everything looks normal. Shame about not finding out the gender though! Hope he/she is not shy at your next scan.

AFM : Had my first pre natal care appointment today. I am booked in for my amnio on the 16th of this month. After speaking to the doctor who is going to do the amnio I am actually feeling a lot more confident about the results. I have a 97% chance its all good and she explained my levels to me. She said my Papp A is not bad really. Its more of a concern if It's under .4 and mine read .42. My HCG of 3.32 she said was slightly high but nothing to be too concerned about. And my 2mm Nuchal fold was perfect. Im still confused as to why I got such high risk but I guess its all a computer calculation. I've also opted for the FISH results as we are going on holiday the week after the amnio and I would like to know the outcome first. Trying to stay confident now!!


#27 MrsBobby

Posted 04 October 2012 - 04:13 PM

Lkd2012, that is absolutely fantastic news for you! I am so glad you got this second opinion and it all turned out for the best!! Still doesn't make up for all the mess around in the last few weeks but make sure you extra enjoy your pregnancy now!!! So happy for you!

Apples, I sometimes have a few sharp twangs in my hip region which I put down to the ligaments or uterus stretching. It hurts but it's only for a split second. It's not so bad that I have to moan though. But then I suppose everyones ligaments are different... And here is one tip for when the phone rings: If you are in a meeting just excuse yourself and say it's important and you have to take it. If it's bad news, just go home! Don't worry about work, it's just work and your sanity is more important! I am sure they will understand. Maybe just tell someone that knows about your situation that you are going home and that they should let the other people in the meeting know that you left. Or stay in that room if you don't feel like you are able to get home. But here is still hoping for good news!!! So fingers crossed it's not going to happen!

#28 DS1979

Posted 04 October 2012 - 06:36 PM

Hi everyone,

I was wondering if anyone could shed some light on this for me. I had high risk NT results due to my blood tests (scan was good) and was told I had a 1: 110 of trisomy 21. The CVS showed that everything was good and the baby did not have trisomy 21, however they have recommended that I have extra scans done at 28 and 30something weeks. What are these scans for if the results were clear? I was in the car with the kids while on the phone to the doctor so I didn't even think to ask what the extra scans were for!

If anyone has any answers for me I'd love to hear them! Thanks.

ETA The main concern I believe was my Papp-A was 0.3. I have been googling and some of the findings are quite worrying! Stillbirth, miscarriage, IGUR, neonatal death, cerebral palsy as well as pre eclampsia....very scary. Does anyone know anything about this???

Edited by DS1979, 04 October 2012 - 07:31 PM.


#29 MrsBobby

Posted 04 October 2012 - 07:37 PM

Hi DS1979, I looked into this when I got my scan results back and apparently a PAPP-A of 0.3MoM is quite low compared to a normal one of 1MoM (risky under 0.4MoM) and it can (not does!) indicate there might be growth problems for the baby in the third trimester hence they will monitor the growth of the baby more closely than normal in the third trimester (hence the extra scans) and if these scans indicate the baby isn't growing to plan they might interfer and get it out a bit earlier than plannend. HOWEVER usually it's nothing you should be too worried about.  Most people just have a really normal pregnancy with a normal size baby! :-) Don't worry!!!

#30 DS1979

Posted 04 October 2012 - 07:47 PM

QUOTE (MrsBobby @ 04/10/2012, 07:37 PM) <{POST_SNAPBACK}>
Hi DS1979, I looked into this when I got my scan results back and apparently a PAPP-A of 0.3MoM is quite low compared to a normal one of 1MoM (risky under 0.4MoM) and it can (not does!) indicate there might be growth problems for the baby in the third trimester hence they will monitor the growth of the baby more closely than normal in the third trimester (hence the extra scans) and if these scans indicate the baby isn't growing to plan they might interfer and get it out a bit earlier than plannend. HOWEVER usually it's nothing you should be too worried about. Most people just have a really normal pregnancy with a normal size baby! :-) Don't worry!!!



Thank you so much for your reply. I know I shouldn't be googling but man it's hard not to - and then all it does is make me panic! With my past two pregnancies I have ended up with extremely high blood pressure - do you know if this could have anything to do with the Papp-A results? Anyways, thanks for taking the time to reply - I am sure if there was something to worry about my doctor would have said so - but it's still so hard not to stress out!

#31 cletus

Posted 04 October 2012 - 09:25 PM

DS1979 - I had low PAPP-A results at 12 weeks. It can indicate possible placental problems (generally after 32 weeks) but they'll just monitor you with scans after the 28 week mark to make sure bub is growing at the same rate and doesn't slow down.

Don't google it!!!! I scared myself silly and then my OB said - look it could indicate the placenta will have issues and you might have a small baby, OR you could have one bigger than your last (DS was 4.6kgs). That's how uncertain the results are!

I'm 30 weeks now so I can't tell you how it has turned out yet - but it looks like bub is growing consistently (which is the main thing), but will be on the small side (but the consistent growth suggests it is just meant to be small, not because of placental problems).

The thing is they don't know - it's just a risk factor they give you and then they monitor you more closely. Chances are there will be nothing wrong and you'll just get more scans than someone who is low risk.



#32 DS1979

Posted 05 October 2012 - 07:26 AM

QUOTE (cletus @ 04/10/2012, 09:25 PM) <{POST_SNAPBACK}>
DS1979 - I had low PAPP-A results at 12 weeks. It can indicate possible placental problems (generally after 32 weeks) but they'll just monitor you with scans after the 28 week mark to make sure bub is growing at the same rate and doesn't slow down.

Don't google it!!!! I scared myself silly and then my OB said - look it could indicate the placenta will have issues and you might have a small baby, OR you could have one bigger than your last (DS was 4.6kgs). That's how uncertain the results are!

I'm 30 weeks now so I can't tell you how it has turned out yet - but it looks like bub is growing consistently (which is the main thing), but will be on the small side (but the consistent growth suggests it is just meant to be small, not because of placental problems).

The thing is they don't know - it's just a risk factor they give you and then they monitor you more closely. Chances are there will be nothing wrong and you'll just get more scans than someone who is low risk.


Thanks for your reply. I guess the most reassuring thing is that at least they know that something "could" go wrong and they are keeping an eye on it. Do you know if you've already had one very low birth weight child that you will generally have another? My son was born at 37.5 weeks and he only weighed 2.2kgs, his skin was all saggy and he had no fat on him at all. I vaguely remember my midwife mentioning that the placenta may have stopped working but the whole way through my pregnancy nobody thought anything was out of the ordinary. My daughter was a decent size though - 40 weeks and 2.8kgs. Anyways, good luck with the rest of your pregnancy, glad all is looking ok for you!

#33 zackcat

Posted 05 October 2012 - 09:03 AM

lkd2012 - you porr poor thing,. How awful to go through such stress and due to simple human error. They really should have checks in place to ensure this cannot happen again. Great news though about bubs health!

apples - i loved your analgy about roads and forks and corners...that's exactly how I feel too. I jump when the phone rings, some days I turn it off so that I can't hear it ring and they will call my DP instead. It sucks living on such tenterhooks....

ral1 - hang in there until the 16th and try not to stress about it.

AFM.....

Ugghhhh....good and bad news after yesterdays appointments. Good news is the CVS Microarray placenta testing has identified Chromosome 2 as the extra marker. Chromosome 9 is also a little odd, but I also have this inverted marker, so they aren't worried about it {it's kind of back to front}. DP got it wrong when he mentioned "K" the other day....no idea whre "k" came from as it's definitely "2".  

Bad news is the amnio test results are not finalised yet {!!!}. But, they are now looking specifically for chromosome 2. And the geneticists are madly researching global databases to see what the impact to bub is, if it appears in the amnio fluid.They said we are a little unique and they haven't seen this before at the RWH.

Good news was the morphology scan, which took over an hour and we had a Professor and 2 Dr's doing it {!}. Everything looked really good. They spent so long looking at stuff and discussing it and visually they said she looks good.

So......5 more days of waiting. We've got another geneticists appointment on Tuesday next week. They haven't seen this at the RWH before, so everyone is very interested in us. I just need to hang in there for 5 more days.......

Edited by zackcat, 05 October 2012 - 09:03 AM.


#34 MrsBobby

Posted 05 October 2012 - 09:26 AM

Oh zackcat, I was hanging out to hear from you!!! So glad the scan showed that everything looks normal. That is a really good thing! I am glad they took the time to have a professor and two doctors looking at your scan, that shows that they are really involved there and want to get to the bottom of it and should feel you are in good hands! Oh no 5 more days of waiting... But I am sure the amnio results will come back fine!! Fingers still crossed here!!

#35 Apples

Posted 05 October 2012 - 09:29 AM

Good morning!

Zackcat, I saw that you had posted and I had to take a deep breath before I could read how you went yesterday.
OMG, I just can't get over how similar our stories are!!! Chromosome 2 - (but ours is that we have an extra partial 2), how they are telling you it is a unique result and searching for answers in the database...
Far out! Five more days!!!  
Crossing fingers that it is still just the silly placenta's fault!  Great news that the scan went well.  Were you able to enjoy it at all even though you didn't have the results you were hoping for?

Still waiting for my results... and now I am doubtful I will get them today based on your amnio Zackcat.  I decided I will call them at 4pm if I haven't heard anything by then.
I was really hoping to know something before this weekend.

#36 zackcat

Posted 05 October 2012 - 09:48 AM

We've got the extra partial 2 too Apples!

They showed us a diagram of the DNA in chromsome 2 and showed that we were missing about the middle third of it in approx 50% of the placenta cells that carried the extra 2.

I think the delay is partly because they were waiting for the Hunter path lab to complete the microarray testing on the placenta culture {it's up in Newcastle and they did the original CVS report}, but also NSW had a public holiday this week. Plus the Professor on the genetics team is on holidays this week.

I think the genetics team are reluctant to give us too much info until they see all the amnio results. She was very careful with her words yesterday, which is understandable.

The Professor sitting in on the US told us that he was quite surprised when he first learnt that as the very beginning of creating a human when the cells multiply after conception about 85% of the cells go towards making the placenta and the remainder go towards forming the baby. He said there is so much multiplying of cells creating the placenta that it is often at that very early stage the placenta picks up an extra chromosome marker. He might have been trying to make us feel better, but it made sense and gave us a bit of hope.

Give them a call at lunch time. If they don't have anything for you by then they won't until next week so better to know sooner rather than later. The genetic Dr we saw yesterday said up at their hospital the entire genetic department are across all cases and all work on them.

Sorry I didn't get a chance to post yesterday MrsBobby....I told the EB group on facebook, but my 4 month old laptop is playing up and I wasn't able to use it to get onto this forum last night. I'm on DP's today and just hope he can fix mine when he gets home!

Edited by zackcat, 05 October 2012 - 09:51 AM.


#37 zackcat

Posted 05 October 2012 - 09:51 AM

Oh and I didnt really enjoy the morph scan...they were so focused on looking for different parts of the anatomy they weren't really talking much to us and it all looked like ink blots. Because it took so bloody long too after the first half hour I was busting to go to the loo and that just got worse so that I was just wishing they could hurry up and finish!

Edited by zackcat, 05 October 2012 - 10:01 AM.


#38 Apples

Posted 05 October 2012 - 10:29 AM

She called...
not good news sad.gif they confirmed the CVS result.
I'm heading home...

#39 zackcat

Posted 05 October 2012 - 10:34 AM

oh sweetheart - i'm so sorry. In tears actually. Is there someone at home for you? Do you want to talk to me on the phone?

#40 Apples

Posted 05 October 2012 - 10:36 AM

thanks... I just sat at my desk not knowiing what to do.
My boss was at her desk so I grabbed her and we went to a room and I just broke down...
she called hubby who is going to come and get me...

#41 zackcat

Posted 05 October 2012 - 10:38 AM

That's good - you will both need each other so much today xx

#42 Mum to a boy

Posted 05 October 2012 - 04:03 PM

Oh Apples -

so sorry to hear  nno2.gif There are tears in this household for you too.

#43 MrsBobby

Posted 05 October 2012 - 06:21 PM

Oh no Apples, so so sorry to hear...  sad.gif I had hoped for a better result for you so much! Please let me know if there is anything we can somehow do for you! xxx

#44 Ral1

Posted 05 October 2012 - 10:48 PM

So sorry Apples xx Its not fair at all! sad.gif

#45 lkd2012

Posted 06 October 2012 - 07:56 AM

Apples I am so sorry sad.gif  will be thinking of you xx

Thanks everyone we feel a huge sense of relief and realise just how blessed we are to have it turn out this way for us original.gif

#46 melbymelby

Posted 08 October 2012 - 09:21 AM

Apples I'm so so sorry sad.gif I had been checking back into this site to see how you were going since we spoke a bit over a month ago. All the best with the decisions you have to now make, Sue at the hospital is so supportive, as you know. If you ever want to talk, please let me know. I know how alone i felt when i was going through it, i needed to talk to people who had been through it as no one else in my life understood. There is a fantastic support group on facebook i can tell you about if you need it, they have been a lifesaver for me. hugs for you apples xxxx

Thanks to those who asked a while ago how i was going, i couldn't even reply at the time, it was all too much. Our baby girl went to heaven on the 6th of September @16 weeks. There was no choice for us, she had full Trisomy 18, 'not compatible with life' sad.gif Every day is still a struggle, i cant imagine life will ever be 'normal' again sad.gif

I wish everyone all the best with all their results, and that you all go on to have happy and healthy babies, as i hope i will in the future xx

#47 zackcat

Posted 08 October 2012 - 09:34 AM

Good to hear from you Melbymelby and thanks so much for letting us know how things have been going for you. I've often wondered how you were coping with the sad decisions you had to make.

apples I am also thinking of you daily and hoping you and your hubby are giving each other as much support as you need during this awfully tough time. It's reassuring to know you've got a good genetic counsellor up at the hospitall to help you through things too.

AFM....I got through the weekend with quite a few moments of panic and tears. Just need to get through today and tonight before our 11am appointment tomorrow with the genetics team. It's been such a long 6 weeks since we first found out something was wrong and I just want to know what turn this journey is going to take. I'm so tired of thinking about it and talking about it and just want to know what is going to happen with our little girl.

#48 melbymelby

Posted 08 October 2012 - 09:46 AM

Thank you Zackcat. Wishing you good news for your appointment tomorrow xx

#49 Apples

Posted 08 October 2012 - 04:42 PM

Thanks girls...
I went to the hospital today to discuss the results and what we want to do. I'll be having the 20 week scan next week some time to see how the baby is coping (I guess for want of better terminology).
Its not going to make any difference to the end result... its just a matter of how we get there.
I'd like the extra time to see if nature takes its course, or if the scan shows abormalities etc, then it will help me with my decision too.  Both me and DH are now on the same page of not continuing the pregnancy... but he is more inclined to end it now and not prolong things, but I am really struggling with being the one who ends the babies life sad.gif
We have to try and find a compromise here, so we have another week or so until the scan... with my best case scenario now being that I will miscarry sad.gif
Melbymelby, I think I would like the details of that facebook group if you could pm me.
My boss is letting me work from home for the next couple of weeks... at least that is one less thing to worry about.  But still a lot of organising for me to do tonight for that to work properly.

All the best tomorrow Zackcat.

#50 MrsBobby

Posted 08 October 2012 - 05:36 PM

Apples, I really wish you all the best for the journey that lays ahead. I don't think I can imagine what you must feel like but I can totally understand that you are hoping for nature to take it's course. I would find it so hard to, as you said, be the one that ends the babies life and I am sure that it would be such a hard decision to make, even if you know in your heart that it's the right decision for you and your DH. I hope that you can find some extra support in the Facebook group, thank you so much Melbymelby for sharing this with us here.
Apples, you are such a strong person and please take care! And the same of course goes to you Melbymelby! I just wish I could give you girls a hug! xxx




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