New thread time ladies
Link to previous thread

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 I just feel sick to the stomach all the time.

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

Hi Everyone,

Unfortunately I belong in here

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
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

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

- Robyn.

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

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 . So there is definately something wrong in my case - they just don't know what yet.

The wait is killing me

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.

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?

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

Jo

Thanks Jo

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

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

Ciao.

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.

Oh Batgirl, I am so so sorry to hear your news 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.

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

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 ...

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

Batgirl,

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.

Jo

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!

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

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!

Cheers

Jodie

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.

Cheers

Jo

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!

Jo

Hi Tayloranne,

Welcome to the group. I'm sorry you are in here too. 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.

Ciao,
Robyn

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...

Vanessa

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

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.

Vanessa

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

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.

Hi Everyone

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

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

My baby is perfect And it's a

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

Great news summer bub !
Congratulations on a pink one
x

Thankyou xfactor

I always lurk in here after having love Tris 18 results with Flynn (but never posted) (Flynn passed away at 19 weeks due to placenta problems - sometimes associated my ob said with low Tris 18 results) and have been following you Summerbub - CONGRATS on your news and wow a beautiful little girl - very special xo Hope you can relax and enjoy the rest of your pregnancy...
Love Kristy xo

Awww thanks Kristy, that is so lovely of you to post. I'm so sorry to hear that you lost Flynn what a perfect name for your little angel. Did you have a low Papp-A level in your bloods?

I see that you are expecting again - that's lovely news! Good luck with the rest of your pregnancy!

Yes I have relaxed somewhat since receiving my results - I'm off to the OB tomorrow to check the baby and make sure that her little heart is still beating away. I can't wait to see her again!

Summerbub, I'm so pleased you got your results and that they were just what you'd hoped. Thanks for letting us know. I'd been thinking of you and hoping all would be well.

And congratulations on your baby girl!

I hope the rest of your pregnancy is plain-sailing and stress free!

Jo

Thanks! Flynn means 'Son of red hair man' and he was our first son and my hubby has reddish hair - so very fitting. Yes my PAPPA-A was very low compared to my other 2 pregnancies... I am on CARTIA now to thin the blood. How did Ob appointment go?

Hi there Ladies,

Just popping my head in , reading and wanting to be around some other ladies in the same boat!

I am not sure if there is anything to worry about as yet, need to wait for my blood tests to come back.

I had my NT scan on Saturday ( I am 37 ) and the sonographer found that the NF was 2.9mm. He said that they like to see it no bigger than 2.5mm. Given my age, he told me that he would reccomend that I have an amnio to see if the baby is fine.

Everything else was perfect. Nasal bone, fetal size , arms legs ect.

So now I am here thinking " what if".

This is my 3rd pregnancy and I never had these worries or issues with my two boys.


I don't think I am too stressed about it at this stage as I don't have all the info, however it is making me google a bit and do the "what if"...

May I ask you ladies what was your babies skin fold and your age?

Thanks so muich..

Hi again girls!

Thanks Bahodie

Kristy, my OB appointment was very uneventful thank goodness! I'm now ready to put this awful chapter of my pregnancy behind me and enjoy the next 5 months

nessed, congrats on your pregnancy! Good luck with your CVS.

Good luck to everyone else.

Just thought I would update again! Dr called this morning and I have a 1:22 risk factor.

They have booked me in for a CVS tonight , 5:30pm. Quietly terrified..

Hi Cinzia

Sorry to hear about the NT scan. Have you have the blood tests done yet, PAPPA etc. They can give you a good indication about what is going on. But the CVS will be definite, are you getting FISH results tomorrow? otherwise you have to wait about 2 weeks for the full results, FISH doesn't show up everything though.

I don't know much about skin folds, they weren't looking at that for me (my bub had triploidy).

I know that the CVS is scary. I found mine was not as bad as I exepcted. The needle for the local anesthetic (sic) was the worst part and then the rest was just this weird pushing and pulling feeling. Just rest tonight after the test and take it easy tomorrow.

AFM:
I got my period on day 37 so it must have been a chemical pregnancy. Oh well back to the drawing baord. Lots more baby dancing for me.

Vanessa

Oh Vanessa, I am sorry to hear your news. It seems that you have been down a hard road.
Just so not suppose to be like this at all. My heart does go out to you. You sound like a very strong woman, and I wish you all the best for a successful pregnancy soon..


The numbers the doctor gave me are : Hcg 1.3 and Pappa .39

I have no idea what they mean. He only told me over the phone so I have not seen a report.

The CVS was done last night at 6pm, I will have the results Wed lunch time. We did pay the extra for FISH so that is a bit of a godsend.

Procedure went well - it did hurt but it was only for a small amount of time .

so now the wait is on for a phone call tomorrow to see what the news is.

Cinzia, firstly I sincerely apologise, we must have been posting at the same time the other day.

I wanted to wish you all the best during this anxious wait. I have my fingers crossed for you that you have a perfect little baby in there.

Vanessa, I'm so sorry

Hi Ladies,

Our results came back today and we have a little boy with Downs Syndrome.

Off to the genetic counsellor tomorrow at 9:30am.

Quite overwhelmed , shocked and dazed however have great family support.

Hi Cinzia,

I can only imagine how how you must be feeling now, being overwhelmed by it all. I'm very glad to hear that you have great family support.

Take care.

Cinzia, I hope you are feeling okay - you are very lucky to have family around to help you during this stressful time.

Best of luck with the genetic counsellor - please let us know how you go tomorrow if you feel up to it.

Thinking of you xx

Cinzia - I am so sorry to hear your news.

Will be thinking of you today.

pm me if you want to talk.

Vanessa

Thanks for the wishes girls.

We honestly did not find the genetic counseller much help. They did not tell us anything that we did not already know.

The questions we had were more about our little boys medical state. And also the severity of his condition. Where in teh spectrum would he fall, what would his future hold for him.

Everything they said was "generally".. so that was frustrating but beyond there control.


We have spent time with a counsellor, a girlfriend of ours who has a child with a severe genetic conditon to here about her perspective and also with the Downs Ass. of Victoria.

We have tried to cover all of the issues , pros and cons and also thinking about what would be best for our little boy.

So to say this has been hard is an understatment. We have not been pushed either way by our family and friends which has been great - they fully support any choice we make.


So to you ladies who are still waiting on results or are in the difficult period of working out what is best for your baby and family - my heart is with yours.

Hi Cinzia,

I'm sorry that you've had this unexpected news.

I hope you will find the answers you're looking for. Have you been able to contact any parents of children with Down Syndrome? There are a few on these boards who are really helpful and would give you an honest picture of what their lives are like.

We freaked out when we got our high risk result (will have to wait until birth to see whether bub has DS as we declined amnio/cvs but the subsequent scans suggest it's unlikely) but we did a lot of research and realised that having a baby with Down Syndrome would be different from what we expected, but we were sure we wouldn't regret it and that our baby would be just as precious to us as our 'normal' baby.

And then a few weeks later we had another scare (this time a potential brain condition) and we realised that there were a lot worse things that could be wrong with our baby! So I hope you get all the information you need to be able to welcome your baby boy into your family.

It's great that you have family and friends to support you. I really do wish you all the best, whatever you decide.

Cheers

Jo

Hi Cinzia

Good idea to find out what your options are, sometimes the health professionals push you in a certain direction and you ned to take time to decide what is best for you.

I agree with Bahodie - it helps to talk to parents who have children with the same chromosome issues as they live it everyday and it may or may not be as difficult as doctors say.

hugs!

Vanessa

Hi Everyone,

Well I had my scan on Tuesday which was lovely to see the baby although it was doing headstands most of the time it was still a great experience. The sonographer did the measurements and then I was to wait for the results to be combined and receive them from my GP on Friday morning. Well that’s what I thought.

So I got to work around 11am quite excited about the scan and then my phone rang and it was my GP the results had already been sent to her and she was quite concerned as the nuchal fold measurement was 5.2mm giving me a 1 in 33 chance of having a baby with abnormalities, so after explaining that I would need to have CVS testing she booked me in for last night at 6pm. I phoned DF and we went to see the GP so she could explain in more detail to us, she has given us both the rest of the week off work. The maternal serum testing was not really a concern it was mainly the nuchal fold measurement.

We saw Dr Andrew Ngu at the Women's Imaging Centre in Berwick and he was fantastic. He did another scan and the measurements again and it was still 5.2mm (we were hoping the previous measurements were a mistake) when he told us that there was still a 97% chance that the baby would be ok we were extremely relieved and it has helped DF and I to think positive for when we receive the results tomorrow morning.

It sucks to see the baby bouncing around on the screen and hear its little heart beating to then be told bad news. we are both trying to remain positive and hope for the best outcome.

I'll hopefully be back on Friday with some good news.

Hi Serenity,

I hope you get the news you want on Friday! At least you haven't had too much time to have to worry between getting the NT scan and getting your CVS results.

And good on your doctor for giving you both the rest of the week off work. It's mighty hard to concentrate on anything else when you're so worried about the health of your baby.

It's hard, isn't it, to be all excited about the scan and then get the nasty kick in the guts of the test results.

We'll all be thinking of you, and waiting for some good news on Friday. Either way, let us know. You'll get plenty of support here.

Cheers

Jo

woops wrong thread

Hi Everyone,

DF and I went to the GP today and the results of the FISH test came back normal for Trisomy 18, 13 and 21 and the sex chromosome. We will need to wait 12-14 days for the full test results but at this stage everything is looking ok.

We are both over the moon and have now announced the pregnancy to all family and friends. Everyone is happy and excited.

Thank you for your support it has been very much appreciated.

Serenity+ that is great news.

Well Monday we are off to have our ultrasound.I'm so scared that they will say the risk is now higher for us.Havent really had much time to think about it until.DS2 had a little operation on Tues so that has taken my mind off it.I know that we decieded that we didnt want any further testing done but it's getting so hard.Not really sure what to do now...Spend most of last night .

How's everyone else going??

Congratulations Serenity+, wonderful news. Best wishes to you and DF. Wow, now you can start to plan it all and get excited.

Hi jules12 - That 12 week scan is so nerve racking! Just take each day and bit of news as it comes (sorry, easier said than done). I hope DS2's operation went well.

I am about CD16 today so in the middle of lots of BD'ing this week

Hi Jules12,

I hope your scan gives you reassurance! Ours did. We too decided to do no further testing after getting our 1:135 for Trisomy 21. Then at 17 weeks, our OB did a quick scan and found that the baby's cerebral ventricles were at the higher end of normal.

So, needless to say, we were extremely nervous about the morphology scan. But it went really well! The baby had no markers at all for Downs and in fact, was measuring long in limbs etc (just like our first baby), and the ventricles looked good too.

Of course, there's no way of knowing for sure without an amnio, but we're very comfortable with it all now. To be honest, in the six weeks since the scan I haven't had a moment of worry about it. And I am also comfortable with the very, very slim chance that our baby girl does have Down Syndrome.

I know that once she's in our arms, she will be ours and she will be perfect, regardless of anything else.

So I wish you all the best!

Jo