Edwards Syndrome diagnosis : Hi everyone, at my 12 week... - NCT

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Edwards Syndrome diagnosis

Shellm profile image

Hi everyone, at my 12 week dating scan, they found my little one had lots of fluid around neck and shoulders, tiny in the outside and enlarged bladder. The hormone tests came back with 1 in 5 chance of Edwards. I'm waiting on the results of NIPT test and had a CVS done yesterday. I'm absolutely devastated. I'm 41 and this is my first pregnancy. Does anyone have any experience with this and what the next steps will be and if I can expect this to keep happening? I'm trying to resign myself to the fact baby is very unwell and isn't going to make it but it just come as such a shock. 💔💔

12 Replies

Sorry that should say 'tummy on the outside'

I don't have any experience of this, but so sorry for what your going through. xx

Shellm profile image
Shellm in reply to

Thank you. Its awful, especially with everything else going on. I thought we were going to able to share good news during these difficult times. Really just want to know for sure and what's next! X

I am so sorry, I do not have any experience of this but I wanted to say that I am thinking of you. Try to hold off making any decisions until the next scan as that way you will have more of a sense of what is what. I hope that the coming days give more answer. I am so sorry you are going through this x

Really sorry to hear this, at such a terrible time too. All I can say is the chances of your baby having Edwards syndrome increase with mothers age, I do not know much more but would suggest talking to other mums in the same position as you and plenty of different doctors xx your not alone

Sending hugs you poor girl . Tough times 😘💐

So sorry you’re having such a worrying time. I can’t offer any experience of my own, but found this organisation who you might be able to get some support/advice from: soft.org.uk/support

X

Shellm profile image
Shellm in reply to

Thank you x

Hi Shellm

My last pregnancy was diagnosed with Edwards syndrome. We found our something was wrong from the dating scan when babies tummy was mainly on the outside and had started to pull the heart out aswell. We had a CVS test completed to make 100% sure and it came back positive for Edward's syndrome.

We made the hard decision to end the pregnancy at 15 weeks... I was told we could miscarriage at any time and if we went full term baby would not live for more than a few hours and we just couldn't go through that.

I'm currently pregnant and just had all the extra tests to come back and no Edwards, plateaus or downs! It was just one of those things... although from experience I know that doesnt help at the time xx message me if you need any support or info xxx

Shellm profile image
Shellm in reply to Katie1986

Thank you so much for sharing your experience. Can I ask how long it took you fall after the termination? I think we are going to have to make that tough decision too. I can't face carrying any longer knowing little one can't survive. It's reassuring to know your second is all good and it was a one off. Thank you again. Xx

Katie1986 profile image
Katie1986 in reply to Shellm

Well I bleed for a whole month after the termination which really wore me down both physically and mentally and then I fell pregnant 3 months later as soon as my periods fell back into nor al cycle.

I personally can totally understand if that's your decision you make... I definitely did not have the strength mentally to do anything different.

I went for counselling after and got in touch with the genetics lab at my hospital who put a whole plan together for my next pregnancy so that if by any chance at all it happened again I would knew sooner.

Xxx

Shellm profile image
Shellm in reply to Katie1986

Thank you so much for this information, it got helps. I will definitely speak with my hospital about a plan for my next pregnacy. Thanks again for sharing xx

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