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Support Group for Hi Risk NT Results #41
112 replies to this topic
Posted 23 October 2012 - 08:47 PM
What kind of risk would you have the test at. Been trying to decide this with hubby as the test itself actually terrifies me and while he said hed support me no matter what but we both decided that if the risk came out high wed prob want to do the test to know but cant think of what is high risk result.
This is all driving me nuts. When i got her msg i Thought it would be about my ultrasound to go over the bleeding and placenta. I didnt expect to be told my bt came back risk of t13.
Posted 23 October 2012 - 09:51 PM
Apples, I don't think you will feel much different until Thursday but it must be a weird feeling thinking that there is no going back now after taking that little pill. I will be thinking of you in the days ahead. xx
Zackcat, that link was a bit of a handful to read. It gave a lot of background information though on how that sort of stuff works. It's just really unfortunate that they can't really give you an answer on what might be wrong with bubs. I can understand you being detached from the little one. It's really just a protective move of the brain, especially because you are the one that's actually pregnant. It must be such a difficult situation for both of you. It is so hard to see your partner upset, I really feel for the two of you. I hope your next appointment will help you get a little bit more clarity and help you to make a decision.
Cheekybuggers, the CVS has risk of approx. 1:100 to have a miscarriage, you need to find out what your risk of having T13 is. Usually they classify you as high risk once you have a risk of 1:300 or higher to have one of the trisomies (13, 21, 18). It's really up to you and your patner to decide if you want to have invasive testing such as CVS or amnio as they do carry a risk if miscarriage (amnio approx. 1:200, but have to be at least 15 weeks). You do not have to have a test! There are people in this forum who have chosen not to have an invasive test done but are rather having more in depth ultrasounds. I had a test done as I probably would not have continued the pregnancy if it would have been positive. But that's up to everyone to decide.
Posted 24 October 2012 - 05:29 AM
Hi again everyone. Up at 4:30am with anxiety over my appointment today
Thanks all for welcoming me here. You will never know how comforting or reassuring your comments have been to me. To answer a few of your questions:
Mum To a Boy I think it is the GC we are seeing. It's the fetal unit at the Mater and that's all I have been told so far. The results would sway our decision to continue so we want a definitive answer.
MrsBobby I'm 34 (turning 35 in 2 weeks). I know this ups my risk factor but I wasn't expecting this...
As for me, I have been avoiding anything on the topic since my last post and even managed to survive the last 2 days at work. My job ends next Wednesday (thanks Campbell) so at least I won't have to worry about taking time off after that.
My partner and I have discussed our likely options and think we will go with whatever is recommended for us today and whatever gives the best balance of speed and accuracy as far as results go. At least we agree wholeheartedly on a course of action depending on the outcome.
My parents can't really understand me not wanting to talk about it - they have a hard time trying to see anything from any other perspective other than their own. Getting old I guess. I just don't see the point in fretting over what ifs and such until we have actaully seen someone. That said, they have been very supportive in looking after our 4yo daughter and had her overnight as our appointment is early this morning.
I'll post back later today after we find out more.
Posted 24 October 2012 - 09:33 AM
Have been avoiding the internet since my amnio. Thank you for all the well wishes. As for my amnio - it hurt a little as the needle went in, but wasn't a painful procedure, just uncomfortable, if that makes sense.... I am still waiting for FISH results, which hopefully will be this afternoon, or tomorrow. I have to say, it's the longest 2 - 3 day wait of my life!!
Petatron - it's sounds like you're in a better "space" after the initial shock has worn off. Hope your appointment provided some more answers for you.
MrsBobby - you are just a champ!! - with all your thoughtfulness and kind words of support
Apples - I don't really know what to say. Sending you lots of hugs and support though.
zackcat - I hope you are doing ok?
CheekyBuggers - because I had unexplained spotting and bleeding as well, I decided to go with amnio (and also I couldn't do CVS in the time frame, due to the slow moving public health system where I live). My odds for DS are 1:44, whereas odds for MC is approx 1:200, so it was a no brainer for me.
Ral1 - I am so happy that your FISH results came back clear!! How long until the full results come back? Waiting for my FISH results seems to be unbearably long, like time has slowed down!
Hope you are all travelling as well as to be expected ladies....hopefully I will have some news to post this afternoon
Posted 24 October 2012 - 10:14 AM
Apples - My heart and thoughts are with you for this Thursday. You have been the bravest person throughout this whole journey and have been such an inspiration to me with your courage and practicality. It’s been such a cruel blow you’ve been dealt with and my heart has just broken for you. No idea if there is anything I can do to support you, but please let me know if there is anything
Hi MrsBobby – I have had such a crash course in genetics. I can now read geneticists code, which I would find funny if it wasn’t so $hitty. I really need to make a choice and stick with it as dragging it on is not doing either of us any favours. I pretty much know what DP feels, so I’m sliding towards keeping her at the moment.
Wishing you lots of courage and luck at todays appointment Petratron. I completely understand you not wanting to talk about it much. I have days like that where I just want the world to go back to normal. Again, good luck today
CheekyBuggers – I agree with everything everyone else has said. My only 2c worth is that each US clinic & each Dr would have their own CVS miscarriage stats. When I had my CVS my DS risk based purely on my age and number of weeks pregnant was 1:12. The Dr performing my CVS procedure had had something like 1 miscarriage in over 350 CVS’s and an even higher range for the amnio.
Hi Mum to a Boy - Glad the amnio went well and hope you get the best possible results soon as the waiting can be terrible. I'm hanging in there - amazingly I had a tear free day yesterday. I also had a 4hr afternoon nap, so that might have helped
Edited by zackcat, 24 October 2012 - 10:16 AM.
Posted 24 October 2012 - 11:02 PM
Thanks Mumtoaboy, just trying to help people as much as possible...
Apples, thinking of you tomorrow. xxx
Posted 25 October 2012 - 12:16 PM
Apples - thinking of you, and wishing you as well as you can be!
It seems inappropriate to post my news today. After two weeks of waiting for an amnio and two and a half long days of waiting, I finally found out my FISH results are good and that I am having a girl. Now, just to wait for the final results......
Please give me a reality check - do FISH vary from the final result very often? Is it safe to start telling friends and family?
Hope you are all travelling well
Thanks for all the support over the past few weeks, you ladies have kept me relatively safe (relative in the way that I may not have been sane to start with!)
Posted 25 October 2012 - 12:35 PM
I think usually the full results are positive too. In our case though, after 2 weeks we were asked to provide blood samples as an anomaly had shown up in the CVS culture. Then another week later we were told that 50% of the placenta cells had an abnormal chromosome 2 ring marker.....so I then had to have an amnio which confirmed the CVS results.
Apples had a very similar experience to me, but her extra chromosome was in 100% of the cells analysed in her amnio and mine is in 4%.
I think me and Apples are the exception rather than the norm though, so try not to stress while you wait.
Posted 25 October 2012 - 12:57 PM
Mum to a boy, that is really great news! Congrats on your little girl! It might not feel appropriate to you but I think it's safe to say that we are all happy for you! Unfortunately it doesn't end well for everyone but I guess that's life... FISH results vary very rarely from the end result, however, FISH results are only for chromosomes 21, 13, 18 and the sex chromosome, as they test all your chromosomes there is a slight chance that they might find something else. This is what happened to zackcat if I remember correctly. I told people (Facebook) after we got the all clear from our 19 weeks anatomy scan, other people (real life friends) already knew after 12 weeks, that was before we had the NT scan...
Posted 25 October 2012 - 03:35 PM
Hi again all, thanks for your well wishes. So... big update for me. Went to my appointment at 8am and opted for CVS. They had to look for availability but then when the GC came back he said they could do it straight away
Was a bit nervous but it wasn't too bad in the end. They had to go in a second time as my muscle cramped around the first needle after they took the first sample and they couldn't get back in. Second needle hurt a bunch and is still sore in that area but apparently they got a great sample from it. I've had minimal cramping and no spotting since. We were really grateful to not have to wait and we were on our way home by 9:30am. Was very optimistic/ hopeful yesterday.
Can't say the same for today - woke up anxious and it has just gotten worse as the day has gone on. We got our call about an hour ago. We have been given the all clear for T21 and are having a little boy. Immediately broke down when I got off the phone, rang my other half and scared the living daylights out of him because I was less than coherent. I have been told it is 'unlikely' they will find any more abnormalities with the long term results. Feeling incredibly lucky to have had a result so quickly.
To all of the lovely ladies here and the very best of wishes to you.
Posted 25 October 2012 - 10:59 PM
Petatron, that is great news!! Congrats on your little ! I am glad you didn't have to wait very long, that's the hardest bit! Make sure you still take it easy for a few days! I suddenly had all this energy after the positive resuts but you are suppose to take it easy for a while. Really good news there!
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