Thank you so much for bumping my post and sharing your stories ladies. I would of had the cvs but my gp hadn't let me know my results came back as high risk so my only option is the amnio since I only found out this news today at 14 weeks
Gamermummy I hate to admit but I have already start withdrawing from family. My sil and cousin inlaw are both 25 weeks pregnant both have said everything is perfect. My younger sister is 4 days behind me and I have already found it hard to talk to her A lot of my friends are pregnant too...I feel like I've just turned into this bitter monster already
Dh will be taking the day off to be with me before and after the amnio. I guess I just have to believe it will be ok and remember that the odds are in our favour.
Thanks for all the hugs and kind words, I really appreciate it
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19-02-2014 20:59 #11
19-02-2014 21:13 #12
@purplelily I just wanted to offer you my virtual hugs, I am so very sorry that you are going through this.
Soldier on, lovely lily, sending lots of positive vibes your way x Stay strong x
"Life Is Ours, We Live It Our Way".
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19-02-2014 21:22 #13
Sorry you are going through this PL.
With DS2 we had a 1:288 risk. From memory the nuchal fold was 2.7, Papp-A 0.500 or something and HCG 1.3 or something. Both Papp-A and HCG should be close to 1. The nuchal fold is considered "safe " if less than 3mm.
All of your results look good, except for the Papp-A, this is definitely what has increased your risk. You are correct that a low Papp-a can sometimes increase the risk of iugr (intra uterine growth restriction).
Ok, so my experience. DH & I decided not to do further testing. The $$ blood test wasn't available in 2012, or if it was it wasn't widely offered. The 19 week ultrasound showed no soft markers for t21, which is of course no guarantee but still felt reassuring. I was scheduled for a 3rd trimester scan at 33 weeks to see if there were any growth issues but bub was on track.
DS2 is chromosomally normal and was 8.5 pounds so a very healthy birthweight. While I knew I would love my baby no matter what and that t21 is no longer the debilitating disability that it used to be, I will admit to feeling a moment of pure dread when he was born, right before I saw his little face. I knew we would be ok with a t21 diagnosis, but I still didn't want to hear that my son wasn't "perfect".
The whole thing was quite stressful, to the point that we chose not to do the NT scan for this pregnancy.
I feel for you. It's impossible not to google loads of stories and information about it all. As a teacher I have worked closely with students that have special needs so have a good insight into how difficult it can be. But I also knew how I felt about my baby, it didn't stop being my baby just because it had a disability. But then I would think about the impact it could have on the life of my existing child. Round and round, a vicious cycle. Such a difficult, scary situation.
All the best hun x
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19-02-2014 21:36 #14
I also had low Papp-a .33 and high HCG, had the amino it didn't hurt. It was an emotional hurt. My baby is fine I also had extra monitoring for Placenta problems.
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19-02-2014 21:37 #15Senior Member
- Join Date
- Sep 2009
Hi purplelily, hugs for having to discuss everything alone with the dr.
My first son was given a 1:5 of DS because his nuchal fold was 7.5mm. I ended up having both cvs and amnio because my cvs result was a bit weird. Having it done is uncomfortable but I didn't find it painful. I had a little bit of cramping afterwards but only rested for 24 hours.
I definitely withdrew from the world. I was still going to work but didn't socialise and we didn't even tell people about the baby till 24 weeks. If your family know what is happening they will understand that you may not be yourself till you get some answers.
Just a suggestion but you could look into genetic counselling. I had mine through the Royal Women's in Melbourne and it was a big help.
Good luck for the rest of the journey.
19-02-2014 22:02 #16
Oh jeez hun how did I miss this! No advice but just loads of hugs. Sorry your having to go through this on top of everything else you've had going on!!!! xoxox
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19-02-2014 22:02 #17Senior Member
- Join Date
- Mar 2012
Sorry you are going through this, its such an terrifying time.
I felt numb when I found out that I was high risk for Downs. Like you, our nuchal scan was fine, it was the bloods that took us to high risk. I also had low Papp-A but no complications eventuated from that.
I did so much research and googling - couldn't help myself. I also couldn't bring myself to tell anyone about the results because we were unsure what our decision would be if we came back positive.
I had an amnio which I didn't find painful at all, just some slight discomfort. I couldn't look at the ultrasound screen though - kept my eyes closed. Went home and did nothing but lay on the couch for the rest of the day. We didn't opt for the FSH results, just waited for the normal ones to be done...longest wait ever!
I had mild pre-eclampsia and delivered a healthy 7lb1oz boy at 36+1 weeks.
All the best. I hope the results and good and you can enjoy the rest of your pregnancy!
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20-02-2014 09:44 #18
Thanks for sharing, seeing real life stories helps So I ended up googling at 5am because I couldn't sleep...I'm feeling a bit better now because I found many positive stories. I know It's only a tiny percentage but it has put a dark cloud over me anyway I'm really close to my mum and sister so have only told them what's going on. I also let them know that if I become a bit reserved over the next few weeks that It is nothing against them I just have so much on my mind. They have both been really understanding so that helps
I hope I haven't offended anybody by acting like It's the end of the world. I know Down Syndrome Isn't the worst thing I guess I'm just shocked. I feel like maybe we will be judged for the decision we make but for our family we need to know But again that's thinking so far ahead hey.
Thanks again for all the wonderful help
20-02-2014 09:46 #19
Gosh you poor thing going in alone
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20-02-2014 10:23 #20
Firstly massive hugs.
I had a risk factor of 1in5 so was recommended a CVS. The risk of miscarriage they give you is more often than not a lot less so try not to think of that.
It's really good that you have connected with the doctor. Ours had no bedside manner whatsoever and it just made me more nervous. Like PPs have said, organise your hubby to go with you and someone with the kids and to cook for you.
The procedure was so quick. The doctor had me close my eyes, breathe normally and wiggle my toes constantly to concentrate on the rhythm rather than too much of what he was doing. I had Dh around my head holding my arms stroking my head telling me to breath too. It did help. It is uncomfortable and you may be a bit crampy afterwards for a couple of days so do as they tell you and plonk on the couch!
I know it's expensive, but if you can afford it, have the FIsH done as you will know the trisomy results the following day and the rest of the chromosomal stuff will take the two weeks but is much lower risk than the others. It made the wait less anxiety provoking as two weeks feels like a lifetime.
It is perfectly normal to withdraw a little. I didn't want to talk about it at all so enlisted my mum to explain to other family if they asked.
In terms of the judgement _ do what's right for you and your family. Those that will judge and ridicule are not worth your friendship and likely have no idea having not been through something like this themselves.
Your dr likely went through the termination discussion with you as it is process. Try to just focus on the here and now and that decision can come when you're ready. Our minds wander to all sorts of places during times like this and it often doesn't do any good to us.
While you wait for the test to come up - do/eat what makes you feel good! That was literally my doctors advise and I took it ;-)
Oh as for us. Our result was clear all round. We do have to have a few extra growth scAns than normal to monitor heart growth but at 23 weeks, so far so good.
Take care and look after yourself xxx
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Purple Lily (22-02-2014)
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