anyone had 1in 25 for edwards syndrome :(

[bishboschone]

silly question I guess but have just had the call you dread. CVS monday..any advice?

Have a good cry - it's about all you can do.

I'm sorry to hear you're facing this. Was it bloodwork or the NT measurement, or soft markers that led to the risk?

Not meaning to try to misguidedly cheer you up, but that is also a 24/25 chance of not edwards syndrome. Good luck with teh CVS.

my nuchal was 2.6..bloods have come back with 1 in 25

duchese..Its hard to think of it like that but thank you.

no soft markers, the sonographer said she was happy with the scan.

Not wanting to stretch the analogy to inappropriate levels but what I mean is that if someone offered you a lottery ticket with a 24/25 chance of winning, you'd almost certainly buy it. The problem with odds is it depends what the outcome is. The odds themselves don't change, but the perception of them does according to what's at stake.

and no soft markers is a good sign as well.

Sounds like your nuchal is on the upper end of normal but not terribly so - so I guess it must be in the bloodwork then. I'm in a similar situation with Down syndrome (1 in 34 - it's all in the bloodwork) but we're waiting it out because it's not something we would terminate for. Edwards is another kettle of fish entirely.

There are a lot of things that can cause abnormal blood test results that aren't related to chromosomal abnormalities. Anecdotally I have seen more happy endings when it's the bloodwork that's causing the problem rather than the nuchal fold but the researchers come up with those numbers for a reason I guess.

As duchesse says - you've a 96% chance of it all being okay although it is hard not to dwell on being "the one" and it is a nasty shock to have screen positive for anything especially after a reasonable ultrasound.

An advantage of the risk being in the bloodwork is that a higher nuchal fold even with a clear amnio could also be an indicator of heart problems but because yours isn't the thing driving your bad results, baby will probably be fine on that count.

The Babycenter boards (Prenatal Diagnosis related) are fairly active and you may find some good support and advice over there, but as you know only the CVS ultimately has the answers.

Thanks again duchesse.. I know exactly what you mean , and I know you are right.. I am 36 and I didn't expect good odds but that bad was a but if a shock .

Thank you sparklies .. Appreciate the time you took to write that. X

Hugs have been in your situation and know how you must be feeling.

My DD was 1:49 for DS and high risk for Edwards and Patau which then came down to 1:2 for Downs following a very detailed scan at the Fetal Medicine Centre in London. I had a CVS there and then and was convinced with those odds that they would come back positive for Downs. There were also soft markers with DD. She doesn't have Downs syndrome.

Please don't imagine the worst - no soft markers is very positive especially with Edwards where they would be likely to be very obvious. Remember these figures are statistics and are not actually based on your baby.

Good luck with the CVS and the results. You should get the results for Downs, Edwards, Patau and Cytsic Fibrosis within 48 hours and the rest of the chromosomal results within 2 weeks.

Rach xx

Thanks rach.. Good to hear a positive outcome x

Hi. Just wanted to stop by and say that my friend had very high risk of edwards. Saw consultant etc and everything turned out to be absolutely fine. She was 40 and altho expecting results like that it still a shock.

I hope everything goes well with the tests and as everyone says no soft markers is very positive

Thanks bear.. Happy stories are always good :)

Hi

I had a 2.6mm nuchal fold, but a risk of 1:15 based mostly on bloods. My risk was for Down syndrome specifically though.

I also had a good scan, no obvious problems. I had a CVS that week and got the all clear, the baby is fine. I've also since had a 20 week scan which also showed everything to be fine.

It is scary, I know, but the odds are in your favour. Good luck for the results.

Claire x

Thank you Claire x

Hi, just to say that my midwife said she had 2 women under her who had a 1 in 2 chance of Down's and both babies were fine. Your chances are really good. Hard not to worry though, good luck and stay positive x

It doesn't have to be certain death for a child with Edward's Syndrome. Have you thought about ringing ante natal testing helpline and/or researching what a baby who has ES actually means?

My baby was thought to have this. We refused all tests as it would have made no difference.

my 12 week scan showed an Exompholos , and then my bloods showed 1 in 5 for edwards and 1 in 30 for downs, had a cvs and guess what , it had edwards. babys with edwards, only 50% make to a week, 30%make to a month and only 5% make it to a year if they do then they are mentally retarded etc etc, if u have other children, then its not fair to give them a bro or sis for them just to die

Bump

My results gave a 1:5 chance of downs when I was pregnant with my third at the age of 42. I had a cvs and it came back all clear. It was a very very stressful time though and you have my complete sympathy for what you have had to deal with.
Would you like to share the results?

sorry,just seen this..all is fine ..am now 26 weeks and expecting a boy.