I'm expecting a son with agenesis of the corpus callosum

Angela Maree - posted on 11/15/2015 ( 2 moms have responded )




I'm 22 weeks pregnant and have just been told my scan show:
The cavum septic pellucidi is not demonstrated and the interhemispheric fissure appears to be widened. No interhemispheric cyst is seen. The lateral cerebral ventricles are of normal size but have a "tear drop" shape. The fetal head features are suspicious for agenesis of corpus callosum.
I'm in New Zealand from what I can find which is very little it seams to be extremely rare and little known. I am a little annoyed at the delay from my sonographer and midwife and anxious waiting for my specialist referral.
Just wanting stories and experiences and photos would be great.
Thank you for your help and support


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Kristina - posted on 11/16/2015




There is a group close to you in Australia that is wonderful and can give you lots of information! Their website is www.ausdocc.org.au/. Agenesis of the corpus callosum actually occurs about every 1:4000 people and there is a very wide spectrum on how individuals are effected. I have a 16 year old daughter mild-moderately effected academically. If you are on Facebook the AusDocc group can be found there as well. Every 2 years the National Organization for Disorders of the Corpus Callosum in the U.S. holds a conference and one of the AusDocc members normally attends, her name is Maree, she is extremely helpful and kind.

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