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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Exomphalos and arthrogyposis

4 replies

Katie128 · 21/08/2013 11:33

Hello,

I was just wondering, on a long shot, if anybody had any experience of both of these defects found together? and if so, were there any chromosome disorders then also found, notably edwards sydrome?

I went to my 12 week scan extremely excited to see my baby actually looking like a baby as at the 6 week scan it was just a blob! Laid down and watched the screen, started crying the second I saw my baby wriggling about and was so happy nothing bad had happened since the last time I saw him/her. After a while of not speaking the sonographer put on a serious face and told us some issues had been found, exomphalos and arthrogyposis of the left forearm... felt like my world had been shattered.. definitely not how I was expecting the scan to go :( Since then I have been to a fetal medicine unit, and been told even with just the exomphalos, there is a 30% chance of a chromosome disorder, and also an 80% (!!!!!) chance of heart defects. They have made it very clear to me with the addition of the arthrohyposis it's a big indication the baby has edwards sydrome.. The affected left hand also has a much shorter forearm bone.

I had an amino test done earlier (ouch) and I'm very anxious for the results so I thought I'd try find any other instances of both of these defects found together and if anyone has any reassurance as I'm very nervous right now while waiting :(

Also, if in the instance it was found to be edwards sydrome, has anyone had a reoccurrence of this in another pregnancy? I will obviously be asking the doctors these questions but I am just looking for any real experiences of these.

Thankyou in advance.. and sorry for rambling/asking lots of questions.

OP posts:
Excited2meetmyprincess · 21/08/2013 11:51

No experience but didn't want to read and run.

So sorry you are going through this. I really hope all turns out well. Good luck xx

Writerwannabe83 · 21/08/2013 13:10

Hi Katie, I can't really offer any advice but did want to offer some support. It sounds like you are going through a very uncertain time at the moment and I hope you get the best outcome of the results. For what it's worth, I'm a children's nurse and have looked after 3 or 4 babies with Exomphalos but none of them had cardiac conditions alongside it.

Good luck, my fingers are crossed for you x

curlywurlyllass · 21/08/2013 22:12

Thinking of you katie
Hope u get your amnio results fast.
I had amnios last wednesday (didnt work n was mega ouch) and then on friday, got the first test results back monday evening.
have no experiance of the issues you are asking about so cant offer advice

your care team seem on the ball tho by sending you for further investigation so fast. My care has had more holes than fishnet tights and left me with no options at 19weeks apart from amnio tests!

I hope you get some positive news asap. Limboland is such a horrible place to be in

Good luck

CupcakeFanatic · 22/08/2013 10:14

I hope everything works out ok for your little baby Katie, big hugs xxxxx

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