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Ventriculomegaly and missing corpus callosum

(9 Posts)
freddiemisagreatshag Wed 13-Feb-13 14:30:47

Not posting for me but for a friend. I have told her to get on here and post, but in the meantime this is the best I can think to do for her.

She is expecting twins and they have discovered that one of the twins has ventriculomegaly. This is worsening and little brain tissue is seen. There is no hydrocephaus as yet.

The docs thing that because the corpus callosum is missing there is a significant risk of the baby being born with various difficulties, both cognitive and physical.

Can anyone tell me the chances of survival with no or little difficulties?

And pray, hold hands, light candles and anything else you can think of.

swampster Wed 13-Feb-13 14:41:55

PMing you.

freddiemisagreatshag Wed 13-Feb-13 14:47:58

Thank you

swampster Wed 13-Feb-13 14:50:21

There is a charity in the UK called Corpal

"Corpal is a not-for-profit support group and charity run by parents, families and carers of children and adults who have agenesis of the corpus callosum (ACC) or Aicardi Syndrome (AS). The charity was established to provide support and information for parents and those affected by these conditions.

ACC is a rare neurological condition in which the corpus callosum, which links the two hemispheres of the brain, fails to develop, either fully or only partially. The effects of the condition are variable, ranging from normal development, through mild development delay to severe learning difficulties, epilepsy, visual impairment and delayed motor development."

swampster Wed 13-Feb-13 14:52:00

And in the US the NODCC is the group. (National Organisation for Disorders of the Corpus Callosum I think). They run a newsgroup which is full of support and advice and chat.

swampster Wed 13-Feb-13 14:54:16

Corpal has a Facebook groups - I can add you/your friend if we 'Friend' each other.

freddiemisagreatshag Wed 13-Feb-13 14:55:28

I have mailed them the links. Thank you so much.

twotimestwo Wed 13-Feb-13 19:42:43

Sorry to hear of your friends diagnosis, I have twins, one of which was diagnosed with severe ventriculomegaly (22cm), and delayed sulcation, she does have her corpus callosum though. Has your friend had a fetal mri or are they going from an ultrasound? We were also told to expect the worse, but so far (16 months) her development is fine, and the same as her twins. It's a nightmare situation though, particularly with the second baby to consider, my thoughts and prayers will be with your friend.

twintwo Wed 13-Feb-13 21:06:01

Hi I had a similar situation as twotimestwo, I also have twins they were both diagnosed with moderate ventricularmegaly and missing corpus callossum. I had appointments at the fetal medical centre, lots of ultrasounds and fetal MRI. We were told the worst case for their prognosis and survival at around 20 weeks. Thankfully the MRI showed the corpus callossum was present. At birth ultrasound showed only mild ventricularmegaly and both boys have developed normally and are happy healthy 4 year olds. Please reassure your friend to get to the best possible advice and treatment available, my best wishes are with you.

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