Hello

[Tegans Mama]

Just wanted to say to hello everyone. Seems to be what everyone else is doing so thought I would follow the pattern!

As most of you know my LO has Spina Bifida, Hydrocephalus, Chiari Malformation, mild talipes in her right foot, and displacement of both hips. She is three months old today and apart from the extra work and stress bought on by her disabilities is an absolute angel

 

[JASMAK]

I have never heard of Chiari malformation. What exactly is that??

 

[Tegans Mama]

Its related to spina bifida - its where a part of the brain is pulled into the spinal canal and damaged because the spinal cord is attached to a vertabrae meaning it pulls the bottom of the brain downwards. It can cause a lot of problems including incontinence, difficulties walking, vomiting, learning difficulties etc. It is also one of the primary causes of Hydrocephalus. Not all people who have it have symptoms.

 

[Deb&Matilda]

hi there,
im here too from facebook matildas mum, my daugther is now nearly 6 months as nearly all the probs your daughter does spina bifida, hydrocephalus, chairi or arnold malformation which ever you wanna call it, dislocated hips and knees and talipes.
We are waiting for the operation to take some of her skull away to relieve the chairi business.
We are on shunt number 4 for hydro.
Going through Ponsetti for talipes.
How about you

Debra

 

[Emmea12uk]

how will i know if tom has chairi too?

 

[Tegans Mama]

Ask his doctor em. It should be on his reports if he does have it.

 

[Deb&Matilda]

Yes em they should know they actually found matildas at birth but didnt rea;;y mention it because they dont tend to do anything unless it is causing any problems which is usually when they are adults, but matildas is causing a cist on her spine which is why they are prob going to remove part of her skull now to relieve it.

 

[Tegans Mama]

Tegan's doesn't do anything to her but we have been told that she might need the op to take some skull away. And also because she was born with a tethered cord (spinal cord attached to the vertebrae) she might need another op on that when she is older to relieve the pressure xx

 

[Deb&Matilda]

it just feels like it is one after another doesnt it xxx

 

[Tegans Mama]

Yeah it does, its like torture sometimes, specially when they are really ill and in hospital xx

 

[Emmea12uk]

oh god! how much more is there lurking that i dont know about?? I am so out of touch! My dont the doctors communicate with me??

 

[Tegans Mama]

Em they tell you nothing unless you ask. Tom obv. didn't have a tethered cord or you WOULD know about that as it is quite serious