22 weeks and waiting for amnio results

[EAnne]

I really need some help and support and due to the Christmas period there is little professional support out there so I’ve turned to the internet. Had my 20 week scan the week before christmas - everything fine up until then. Was told at the scan that baby had an exomphalos and this could mean further complications such as chromosomes problems. We were then told to just go home and wait to see if a specialist would see us. They phoned the next big hospital that has a FMU but because it’s Christmas they wouldn’t accept us. Then asked if we would travel to a hospital that would. I said yes we would go anywhere. Finally got a call to say a hospital would accept us on 27th December which we said yes to. We then spent a week of hell waiting to see this specialist. Christmas completely ruined. I’ve just been in bed and locked myself away from the world. I can’t see anyone. I’m visibly pregnant (22w now) and don’t want to see people.
Went to the appointment Thursday for the dr to confirm exomphalos and also concerned about the amount of fluid around the neck. It’s now over 7mm. This has never been mentioned before. All pointing to chromosomes issues. We then opted for the amniocentesis test which he just did right there and then. We then were told to go home and wait for results. So it’s saturday now and we still have no idea. I can’t get out of bed as I’m so distraught. I can’t believe we have got this far and in this situation. I can feel baby moving and it’s just heartbreaking to think it might not survive. They said we might have the results on Monday (new years eve). What a wonderful way to start 2019. We have already had the discussions and conversations about what we will do if the results are the worst. I just feel so alone and so helpless. Everyone knows I’m pregnant and I’m scared of the TFMR. Any advice or similar stories would help.

So happy for you!!
I think you should jump into that little dress, put some lipstick and go out and celebrate.
Yes, the road ahead will be bumpy but that's alright!
Best wishes for a marvellous Happy New Year and keep us updated on how you and the little one are doing.

I hope you have a peaceful night, I guess sleep has been hard to come by.
Fingers crossed the rest of the pregnancy is a happier time for you, and the issues can be resolved.

That's wonderful news. What a great start to the year. Fingers crossed for you that things continue to go well.

That’s fantastic news! I’ve been checking to see what the outcome was and it was lovely to read a positive one! Best of luck for you and your little one! Xxx

Just wanted to say EAnne that 7 years ago I had the same diagnosis , exhamphalous .Following the scan I was told that my baby had Edward’s syndrome, I was given information about termination and sent home . We were told I could have an amino to confirm the diagnosis but I could have a miscarriage as a result of this. It was a Friday afternoon so there was nothing we could do until Monday .Anxious wait until the procedure took place but received the result within less than 48 hours. Confirmed that there was no chromosome issues. Stayed in hospital only for 3 weeks after the birth.
We had a surgery when my little one was 18 months old - it all went well - we were home in 3 weeks . We only needed one surgery ( often they have to do stages) We had an amazing care at the hospital , they couldn’t do enough for us.
I have a very bright and active almost 7 year old who doesn’t stop to amaze us.

We had been introduced to other parents with exhomphalos babies since so they can see that babies do make full recoveries - at the time I found it very difficult to find information relevant to us hence we decided to offer to meet others in similar circumstances.