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Encephalocele

3 replies

Pixieanna · 11/01/2024 12:57

Hi,
I am 15 weeks pregnant with my second child and at our 12 week scan we got told our baby had a lump they couldn’t work out if it was on the head or the spine, we waited another week when they confirmed it was Encephalocele at the back of the head, as you can imagine I broke down instantly, I had a CVS test but everything came back fine and we found out the gender, they want to do an MRI Scan when I’m 20 weeks to see how much of the brain is affected, we got told to consider termination as the chance of survival is low and if they do survive they would have life long disability, be in pain all the time, will needs lots of different surgery’s.

I have tried doing research on it but not a lot has been written about it and the Drs that are currently dealing with me have only seen 1 other baby with this and they didn’t survive past 3 hours old!!

My heart is absolutely breaking, I cry all the time and can’t stop thinking about the what ifs? But I also don’t want my child to be in pain it’s whole life and I don’t have it in me to carry a baby to full term knowing they might not survive, and I’ve another little one who will only be just over 1 year old when this one was born!

I am just so overwhelmed with everything and I feel so guilty that it’s all my fault

Has anyone been told there baby has
/ had Encephalocele? What did you choose to do?

OP posts:
InnermostHealthcare · 11/01/2024 15:52

You should ask to be referred to your local fetal medicine unit and they should offer a consult with a paediatric neurologist. Fetal brain MRI would provide more information to allow you to assess the implications and make informed decisions.

Pixieanna · 11/01/2024 16:34

@InnermostHealthcare our hospital is a fetal medicine unit and they won’t do a MRI scan or make an appointment with a neurologist until I’m 20 weeks

OP posts:
InnermostHealthcare · 11/01/2024 17:50

they cant do MRI much before that and I suppose they want to get as much information as possible to help the paediatric neurologist. I am sorry you are having such a difficult time.

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