Edwards and patau syndrome
Crawford01 · 29/08/2019 19:21
Had phone call yesterday to say my baby has a 1:27 chance of having edwards and patau syndrome, I have to go in on Monday to have the amniocentesis completed.
Just wondering if anyone has had smiliar results and the baby has been OK?
Also got told I have a low PAPP.
SleepingStandingUp · 29/08/2019 19:29
So experience but just wanted to send you a huge hug. Remember baby has a 26/27 of being fine x
KTD27 · 29/08/2019 19:36
Oh Crawford I’m sorry. Try to stay as calm as you can.
My baby had Edwards syndrome she was just one of the very unlucky ones I guess. Did they find any markers - a high NT measurement or anything else? Or is this based on your 12 week bloods? How far gone are you? They usually cannot do an amniocentesis until you’re further along so it may be a CVS test instead.
Massive massive hugs it’s a really scary time. I hope your baby is absolutely fine
Crawford01 · 29/08/2019 19:36
Thank you, I'm trying to remain positive it's just so hard, when you see the real outcome of this horrible situation, but I have read some positive comments, just trying to see if positive outcomes are alot more regular xx
Crawford01 · 29/08/2019 19:39
This is off the bloody results and the scan, I am now 14+3 so I will be over 15 weeks by Monday so I will need to have the amniocentesis, the lady that done my scan struggles to get the measurements as the baby was moving around alot so don't know if I'm clutching at straws and hoping that it's wrong, but I'm seeing more that the test will be right xx
SleepingStandingUp · 29/08/2019 23:19
Given the risks assoc with amnio remember you have every right to refuse it if you wish. Did they pick up any issues with baby on the scan?
Crawford01 · 30/08/2019 05:58
No nothing, she said she was struggling to get the measurements, but that was it as the baby was wriggling around lots,
aweedropofsancerre · 30/08/2019 06:31
You will read good and bad outcomes on here. You will be anxious until you get the results. It’s an awful time waiting, I have been through it three times being told I was high risk , out of the three one outcome wasn’t positive but in my heart I new because of markers on the scan related to the heart. All I can say is I hope the outcome for you is a good one. Stay strong...
Crawford01 · 30/08/2019 08:57
Thank you. The waiting is awful, I do agree with that, I've had 2 previous pregnancy and was low risk and that was with boys. Hopefully the results will be OK. If you don't mind me asking when your results for the other 2 came back OK what was your ratio? If you don't mind me asking xx
aweedropofsancerre · 30/08/2019 09:52
Crawford01 don’t mind you asking at all. 1:32 for DS and similar for Edwards. The other was 1:4 for DS , 1:9 for Edwards. Both boys
Crawford01 · 30/08/2019 10:04
And them ones came back OK? After you had the amniocentesis? Xx
aweedropofsancerre · 30/08/2019 10:06
I had a cvs (chorionic villi sample) which is done earlier so at 13 weeks and sample take from placenta. Both came back clear and has two healthy boys .
Crawford01 · 30/08/2019 10:09
aweedropofsancerre you have helped me, knowing there is some hope that it may still come back low risk xx I'm sick with worry xx
PenelopePeachStone · 30/08/2019 10:17
Hi I had exactly the same - low pap a reading with 1:10 chance of downs and 1:100 chance of Edwards/pataus... also had to have 2 12 week scans and they couldn’t get measurements... everything thing came back fine and now have a beautiful 4 week boy :)
My best advice is not to google... I did and it kept me awake all night every night... then being exhausted made the worry worse...
I had an amino on a Wednesday and got the results the following Tuesday.
I’m sure everything will turn out fine xxx
Crawford01 · 30/08/2019 10:36
Thank you, you have given me some hope, mine foe DS was low risk but 1:27 for Edwards, they said the measurements are OK it's off the bloods and LOWPAP xx
CharlotteEM · 30/08/2019 10:38
I had a call earlier this week and our risk of D/S is high. Was supposed to have a CVS yesterday but the placenta wasn't in the right place and also the dr wasn't comfortable doing it as I was 14+3 (which you'd think they'd have known...) so I am now booked in for an amnio on the 9th and I'm feeling so anxious about it all.
This is my third pregnancy - the other two were miscarriages - and I just hate that this is happening.
I'm sorry you're having to deal with the stress of this too. Sending lots of hugs your way xx
CharlotteEM · 30/08/2019 10:38
I should have added - I also have a low Papp-a reading too xx
Crawford01 · 30/08/2019 10:39
Thinking of you, I know the worry and stress isn't great xxx
ROSESTEN · 08/09/2019 20:42
I just wanted to say how helpful I have found this thread. I am having amniocentesis test for Edwards tomorrow after having a high risk at 12 weeks scan and then high risk with the nipt. Reading some positive outcomes has really helped . Up until I found mumsnet I didn't think they existed. So thank you.
CharlotteEM · 08/09/2019 20:55
I've got my amnio tomorrow too - hope all goes well for you xx
ROSESTEN · 08/09/2019 21:49
CharlotteEM: You too. Xx
aweedropofsancerre · 08/09/2019 22:01
Hope all goes well for those waiting for the outcomes of tests....
Crawford01 · 09/09/2019 09:37
Hi I got my results and the baby is fine and I'm having a little girl, honestly I didn't use yo think there was any hope, but now I am happy to say keep positive and 8 gave my fingers and everything crossed for you all xxx
aweedropofsancerre · 09/09/2019 10:29
Crawford01 fantastic news
DioneTheDiabolist · 09/09/2019 10:33
That's great news OP.
Crawford01 · 09/09/2019 10:54
Thank you I can now start and relax, after 2 boys she is a lovely finishing piece to our family. I hope and wish you all the luck who are waiting for the results xx
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