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Support Group for Hi Risk NT Results #41


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#51 melbymelby

Posted 08 October 2012 - 06:45 PM

Apples, i have sent you a message xx

Thanks MrsBobby, it's been a really rough time, I truly hope no one else has to go through such a thing.

xx



#52 Mum to a boy

Posted 09 October 2012 - 03:49 PM

Hi everyone

I have just come from my appointment with the genetic counselor and am booked in for an amnio on 22nd October, so 2 more weeks of this waiting game.

Just by coincidence the counselor was the ob/gyn who delivered my only child 3 and a bit years ago, and she is just lovely.  She did a scan of the bubs who was kicking and punching and just generally wriggling around and all looked good.

I also managed to get a hold of the MoM results of the BT's.  She had to call radiology where I had the scan taken and get them faxed over, and by all means the initial report that was sent to my GP appears to only be half the report.....

The scan itself, is completely normal and due to maternal age my risk factor was 1:92 but when adjusted with the BT's it it 1:44.

My beta HCG is equivalent to 2.159 MoM - which I gather is quite high
My PAPPA-A is equivalent to 0.460 MoM - which I gather is quite low

All you lovely ladies out there, could you help decipher what all this means and give me some reassurance please!!

TIA

#53 MrsBobby

Posted 09 October 2012 - 04:25 PM

Mum to a boy, that doesn't sound so bad after all! Your risk might sound pretty high but it's mainly due to maternal age. Your scan looked all good so that's the main thing. Your blood are not that bad either. They say that the PAPP-A should be above 0.4MoM which yours is well away from and your HcG might be a bit high but I think it's still within reason (can't find the exact limits right this second). If you think about it, your risk was about doubled after the BT, my risk was quadrupled... And our bubba is fine (so far anyway, still waiting on the final results from the amnio which are due this week)! So please don't stress too much! It is very important to have a good scan, bloods can be thrown out by a lot of things...

#54 zackcat

Posted 09 October 2012 - 05:23 PM

Thanks for all your well wishes this morning. It's nice to know there are so many cyber hugs for bub.

Unfortunately we didn't get the good news we were hopping for. They found the extra chromosome 2 ring marker in a small percentage of the amnio fluid cells.
They really don't know if that means no impact, minor impact or major impact. They don't know if it could present as a physical abnormality, learning disability, mental deficiency etc.

There hasn't been a study on this type of scenario since 1996, so it's hard for them to provide definite info for us. They still say that the cells impacted might not even be the baby, but might be isolated to the amniotic membrane.  

Things in our favour are the morph scan looked good and the amnio percentage is small at approx 4% of cells impacted where the placenta cells were 50% affected.

So next steps are....another morph type scan on Friday with both the genetic Prof and the Ultrasound Prof attending and they will be looking for facial abnormalities amongst other things. Often one of the first indicators of a problem are facial deformities that are visible at birth, so they want to see if 3D images show up anything.

Then next Thursday there is an echo cardiogram by a cardiologist to focus on the heart as often chromosome abnormalities affect the heart.

They also want to move us out of the normal antenatal/birth system at the hospital and under the full time care of the fetal medicine team.

My heads still spinning from the long session we had with the geneticists today. So much to absorb and process.  

Melbymelby - do you think I could benefit from the facebook group mentioned? I'm struggling to talk to friends about it as it's so uncommon.

#55 Apples

Posted 09 October 2012 - 05:37 PM

Zackcat: sorry that you weren't able to get any definite answers... but I think there is still hope for you!
That 4% is good news.

When we went in yesterday I asked whether it was all cells, and it was.
The 3D images would be fantiastic to see and should give you some good answers.
From what I have heard from Melbymelby, I don't think that group would be right for you at this stage.  There is also the Pregnancy Loss Australia website which I have started looking through today, and I think that wouldn't be right for you at this stage either.
Sorry, not much help am I!  But really, I feel positive for you, and looking through these sites will just depress you.



#56 MrsBobby

Posted 09 October 2012 - 06:28 PM

Zackcat, cyber hugs not only for bub but for you too so make sure you take your share!! Not sure what to say about the result. The 4% shows that obviously it's only a small amount of cells affected so I would take that as a good sign. Did they say anything about the possibility that those cells might still just be from the placenta? I am not sure what the "layout" is in the there but wouldn't it be possible for placenta cells to swim in the amniotic fluid?! You did say it could just me in the amniotic membrane, is that what that meant? Obviously it is a lot lesser amount in the fluid than in the placenta so that's good news.

I am glad the morph scan looked good so far but obviously it must be so scary for you to be having to have all these other tests and then hoping that they don't find anything... I find 3D images of baby scary at the best of times and can't even imagine what it would be like if they keep looking for abnormalities and you just keep hoping that they won't find anything... I guess unless they poke a needle into the baby and take cells from it directly they won't know for sure where the cells are from anyway. Sorry I am not much help to you either I think but I had just hoped for you to be getting the all clear today! This one is just for you:  bbighug.gif

#57 zackcat

Posted 10 October 2012 - 11:23 AM

Mum to a Boy, I'm afraid I bypassed the NT scan and bloods and went straight to a CVS, so I don't know anything about those figures. Hope you get the answers you are looking for.

Apples - you are such a sweetheart. You've got so much on your own plate, but still have the strength to be supportive and positive for me. You are an amazingly strong woman!

MrsBobby - When we had the amnio, I'm sure they said that it would definitely tell us if the extra chromosome was in the amniotic fluid, which in turn would mean in the baby. Then yesterday they said with such a small percentage it could actually be in the "amniotic membrane", which means it might not be in the baby. First I'd ever heard of an amniotic membrane?! I think it's like the sac that encases the fluid?

I think the 3D images are creepy too....not sure I want to look at them. They aren't actually the baby's face, they are computer images based on ultrasound waves. Kind of like a best guess from the computer.

One of the other tests we discussed was a fetal blood sample, but they decided unless it showed a big percentage of abnormal cells it wouldn't give us any useful information to base decisions on. ie: if it just showed 7% that wouldn't help us much. It's a very high risk and invasive procedure that they only do in rare cases and just didn't think it was worth the risk.

Any news for you yet? Must be any day now?

AFM....I am so tired. Sleep is eluding me at the moment. I fall asleep quickly enough, but wake up about 2 or 3 am and stay awake for ages. I want to shoot the damn birds that are up at that time of day. And yes, there are an annoying amount of them!

#58 MrsBobby

Posted 10 October 2012 - 12:35 PM

Zackcat, no news here yet, today it's been two weeks I hope I get the phone call soon... If they need extra tests on us they better be quick, DH has to go away again in 10 days... I booked my morph scan for Friday week. Hope to have the results before then... I hate how DH has been away so much since I have been pregnant, he missed half the pregnancy so far!!

Yes, the amniotic membranes are what holds the fluid in. I thought I never heard of it either but then I think I heard someone say: Your membranes rupture, as in your water breaks... Same thing! Makes sense I guess! I suppose the membranes will shed some cells too so hopefully it might be from that. It must just be aweful not knowing if it means something or nothing. sad.gif But it's certainly not helping to make being pregnany enjoyable... I can understand you wouldn't want to do the fetal blood sample taken. They explained that procedure to us when we had our amnio (not quite sure how we got onto that topic!) and I don't think it's anything I would really want to do to little bubba.

#59 MrsBobby

Posted 10 October 2012 - 12:52 PM

Oh she just called me then! Bubba is all good, no chromosomal abnormalities or markers found anywhere!! Very relieved here! Although it's kind of dampening to know that some of you guys didn't get the same result so I have a laughing and a crying eye today.

#60 melbymelby

Posted 10 October 2012 - 12:59 PM

Hi Zackcat, i'm sorry to hear you didn't get the best news. hopefully everything will be absolutely fine for your baby though!. all the best with your upcoming scans and tests. i agree with apples and that group  wouldn't be good for you. it's about pregnancy loss, so definitely not what you need! im sorry i dont know of any other groups that would be helpful to you xx

#61 Apples

Posted 10 October 2012 - 01:00 PM

Great news MrsBobby! original.gif
So happy for you.  Hope you can now relax and enjoy the rest of your pregnancy xxx

#62 zackcat

Posted 10 October 2012 - 04:27 PM

You've put a smile on my face MrsBobby - so happy you got the all clear.

Take today to be happy for yourself...you deserve it after your anxious wait  grin.gif

#63 MrsBobby

Posted 10 October 2012 - 05:20 PM

Thanks Zackcat and Apples, I just feel like we kind of went into this together and now I seem to be the only one out of the three of us to have gotten the all clear. I just really wished that we all had gotten the all clear!! If that makes sense... I realise I only know you guys through this forum but you have grown close to my heart and I wish we could all be relieved together... Your support has meant so much to me over the last few weeks and it has helped me soooo much, I'll never forget that and I wish there was something I could do to make things better for the two of you...  hhugs.gif

#64 Apples

Posted 10 October 2012 - 08:08 PM

wub.gif
aww thanks Mrs Bobby, brought a tear to my eyes...

I know how you feel though, that we have gone through this terrible time together, something that nobody else really gets... I've stuck around because like you said we have grown together through this... and I need to know how you go and repay all your support you gave me.
I'll be stepping back a bit now... I've made my first post in the Termination due to anomoly support group today: http://www.essentialbaby.com.au/forums/ind...;#entry14981972



#65 MrsBobby

Posted 10 October 2012 - 11:47 PM

Thanks Apples! I hope the other group will give you the support you need! Please always remember that you are so strong and you will get through this somehow! xxxxxxx

#66 Mum to a boy

Posted 11 October 2012 - 12:26 AM

Take care Apples

#67 zackcat

Posted 11 October 2012 - 01:48 PM

I feel the same way too. We were lucky to all find this little group in cyber space. None of us wanted to be here, but the support has been invaluable and everyones experience has touched me in some way forever and shown me how precious and fragile our lives all really are.

Apples I know you will find the same support in your new group while your particular path evolves. Again I want to say, you are a very special and courageous lady and have dealt with the most awful of circumstances with such class. Please be gentle with yourselves and take care xx


#68 MrsBobby

Posted 13 October 2012 - 10:10 AM

Zackcat, just checking in to see how your scan went yesterday?! Bit worried that we haven't heard anything from you. I hope all is well. xxx

Mum to a boy, I hope you are travelling ok?

Ral1, I hope you are not too nervous about your amnio next week! It really wasn't bad at all for me! They explained everything very well and when it was time for the needle I just lay extra still and watched little bubbas feet on the screen...

And for everyone else,  bbighug.gif

#69 Ral1

Posted 13 October 2012 - 01:27 PM

Hi everyone,

I havent really known what to write on here.........Apples & Zackcat Im sorry your whats been happening with you both.  bbighug.gif

MrsBobby well done on the results! Thats great news!

Im not really nervous about the procedure itself, Im really nervous about the outcome. I hate feeling like I have been the last few weeks. I keep having thoughts that either Im going to feel great this time next week or this depression is going to continue. I want to be happy again sad.gif Im just trying to keep myself busy and as soon as I sit down and think Im a mess. Arggg......

3 days to go..................

Hope everyone is keeping as well as can be!


#70 MrsBobby

Posted 13 October 2012 - 03:08 PM

Ral1, I was feeling exactly the same... Just tried functioning in the weeks between... Are you going to get FISH results? That helped me so much although I was a bit on edge still until we got the final results...

I was so mentally exhausted after the amnio that I just slept for most of the afternoon and for some reason I was kind of relieved if that makes sense. I was expecting to be so nervous but once the procedure was over I kind of was in this little "can't change it anymore now anyway" bubble and that was weird but I wasn't a total nervous wreck for some reason. But when we got the phone call I cried like crazy afterwards because so much stress fell off me... And I am usually a really positive person so was trying to tell myself that everything was fine the whole time...

#71 zackcat

Posted 13 October 2012 - 05:37 PM

Thanks for thinking of me MrsBobby

I'm teetering between crying and feeling like I'm going crazy most days. I don't think we are going to get any more test results that will help us with our decision making.

It's unlikely that on Thursday the fetal cardiologist will see anything abnormal. The heart has already been scrutinised by the Prof and 2 Dr's.

The facial scan didn't throw up anything unusual yesterday and they spent ages looking at it.

Reality has sunk in that we have to make the most awful choice based on what we do know, but without knowing how exactly bub might be impacted by the extra chromosome ring markers.

It's a truly horrific position to be in and I'm not coping too well with it.

I totally get your feelings Ral1. It sucks big time and I am so sick of not being the normal happy person I usually am. We've been stuck in limbo for over 7 weeks now and now just have a hard choice to make. I guess my advice to you would be to make sure you both keep talking to each other and don't clam up. And seek mental health support if you feel the strain becoming unbearable. If you aren't suffering from morning sickness then try and get out for fresh air and some gentle exercise too.

#72 Apples

Posted 13 October 2012 - 08:57 PM

Oh Zackcat sad.gif
the best you can do is make your decision based on the facts that you do know, and never turn back and ask what if...  that is some advise I was given.

thinking of you...

#73 MrsBobby

Posted 13 October 2012 - 10:21 PM

I honestly don't really know what to say Zackcat! But I think Apples is right.

Please make sure you take your own advise and get help if you need it! I wish there was anything I could do to help you!  sad.gif

Edited by MrsBobby, 13 October 2012 - 10:22 PM.


#74 Mum to a boy

Posted 15 October 2012 - 01:06 PM

Hello everyone

I'm a bit the same as Ral1 - I haven't really known what to write on here.........

Thanks for asking about me MrsBobby - great to hear your good news and my sincere condolences go to Apples and Zackcat.

AFM - the day/night that I saw the genetic counselor I googled like mad to get more information on what my results may or may not mean and came to the conclusion that I just have to wait for the amnio, so haven't googled since.  No matter what my odds are, I'm either going to be the 'one' or not.  I am anxious and worried, but I try not to let it consume me, and I seem to have found a strength that I didn't know I had!

My amnio is a week today, so in about 9 days I expect to have some FISH results, and I'm saving my "meltdown" whether they be good or bad, until then unsure.gif

Ral1 - all the best for tomorrow.

Big hugs to you all  bbighug.gif


#75 Ral1

Posted 15 October 2012 - 05:44 PM

Zackcat- Im so sorry u have to make such a big decision. I cant offer any words of help.......it truly must be awful to be in that position, I am thinking of u xx

Mum to a boy - I hope this week goes fast for you! Your on the home run now....wishing u the best. I have been a mess but surprisingly these last few days I have been keeping busy and havent had my mind on it as much.

MrsBobby - yes I am getting the FISH results. Turns out they dont actually offer them unless the patient mentions them (turns out the googling came in handy). She did say it can take four days to get results but Im not sure whether she meant four days from Thursday (weekend wait) as thats what she originally wanted to book me in for. I hope its only 2 days max! I think I will be ringing them everyday to check for results.

xxxxx







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