Right side of brain not formed properly

[Gracie124]

Hi,
My dd is due in a few weeks. We found out at a routine growth scan that she has some issues with the right side of her brain. Mainly an enlarged ventricle and possible schizencephaly. We had an mri and the large ventricle was confirmed but they couldn't tell us much more. They've said they won't know how it will affect her until she's born or even until she's much older. She could potentially have left side weakness, epilepsy and cp all with varying degrees. Has anyone else had a similar experience or has a child with same issues? There's not much info online and I dont really know where to start or who to talk to.

Thanks

This must be very worrying for you. I hope someone with some knowledge comes along soon

My niece 14 has schizoencepaly, I know there are variations but thought you might like to hear about her. She has cerebral palsy effecting her left side but copes very well with it, wears a splint, calls her left hand ‘naughty’. She does have a mild learning disability but luckily no epilepsy. She is an absolute delight. Very emotionally intelligent, sociable, kind, quite self sufficient. My son has a more severe learning disability, with no known reason, nothing that would have shown in a scan. It’s a lot to take in I’m sure when baby is yet to arrive. When my niece was born the paediatrician said that it was unlikely that she’d ever walk or talk. You’re so busy with the day to day job of parenting that it just becomes you’re new norm. Do look for local support groups. Go to the usual baby and toddler groups (if that’s your thing) but sometimes you need to speak to people who are having/have had similar experiences. There is so much I could tell you but you’ll be so busy just as a new mum. Congratulations and all the best x