hi my name is gillian and i have a 1 year old daughter, Orlaith, born with hydrocephalus. she had a vp shunt inserted at 3 weeks and so far so good, no problems with the shunt. we dont know anyone else with the condition so was delighted to see this forum.

we live in Ireland and have two other children besides orlaith, ciaran (14) and aoife (11).

so, orlaith does have a problem with low muscle tone in her hips, pelvis and legs and isnt standing by herself yet. she gets physio on a daily basis from us and sees her physio once a week. dont know yet what other problems we may encounter as she is so young so other things have not become evident as of yet. she is behind on her development by approx 4 months as in she is only starting to babble words and only now learning that mama & dada do correspond to usother than that she is an absolute darling, very good and always full of smiles for everybody, wouldnt change her for the world... just worry about her a lot as she cant tell us if she has a pain etc., also we dont know what to expect in the future as all the drs here seem to give us worse case scenarios (as in we were told when i was 36 weeks pregnant that she probably would not survive due to the severity of the hydrocephalus)

anyway ive rambled on enough here. hope to chat to all and maybe learn something of what to expect etc.

gillian

Hey, Gillian!

Welcome to NT!! It's usually quiet in here, so don't be surprised if you don't hear from a lot of folks for awhile.

I am a 40 yo mom who's always had hydro. I'll be happy to answer any questions I can for you. Just fire away.


LIZARD