new

[chacha]

hi my name is ancha im 43 and i live in leeds england im married to kojo and have 5 children sery 10 maurizio 7 ascenzi 2 and twin girls kesewah and ohenewah who have just turned 3 mths i was told at 17 weeks that ohenewah had sb and hydro the sb been low down near her bottom would love to chat with people and share experiences

[cadon's mum]

Hi, i am also from England but down in the south. I have 4 children 14,10,7 and Cadon who is 17 mnths. He has SB and hydro too. Welcome to the group!!

[Dodger67]

Welcome! :happy065:

[chacha]

Hi, i am also from England but down in the south. I have 4 children 14,10,7 and Cadon who is 17 mnths. He has SB and hydro too. Welcome to the group!!

thanks or sending me a message its nice to meet people who share simlar experenices hope all ur family r fine mine r ok its always crazy in my house i bet its same in your too what level of sb does cadon have ? ohenewah can move her legs but its hard to say if she will be able to walk got to go kids r back soon got to cook tea hope to hear from u soon x

[cadon's mum]

Cadon'S SB is sacral about S1 -S3. He can also move his legs down to his ankles and sometimes his big toes. He can pull to stand and is currently cruising round the furniture. His ankles are not very stable so he wears piedro boots for support. Yes it gets pretty crazy in my house too, but i would'nt have it any other way I love having a big family.

[chacha]

Cadon'S SB is sacral about S1 -S3. He can also move his legs down to his ankles and sometimes his big toes. He can pull to stand and is currently cruising round the furniture. His ankles are not very stable so he wears piedro boots for support. Yes it gets pretty crazy in my house too, but i would'nt have it any other way I love having a big family.

I dont understand what the s1-s3 stands for how do i find out what ohenewah is, sorry for been so thick. thats really good that hes able to walk around the furniture. Im the same as you i love been a big family it always what i wanted, im very proud of my children there a really blessing and bring me and my husband kojo a lot of joy X

[LisaJoy]

Hi, Chacha! Welcome & glad you found us.

S1-S3 refers to the area of the spine affected: S = sacral, meaning the very lowest part of the spine. L = lumbar which is the next higher region. T = thoracic, which is from about the mid point of the back up through the shoulder blades. C= cervical, which is the neck. The numbers refer to the specific vertebra. C1 is the first vertebra at the top of the spine, and S3 is the lowest (there's technically a few lower vertebrae, but they are different, as they are fused together and form the sacrum and tailbone). Most people with SB are affected at the lumbar or sacral level, or both. So if someone says they are L5-S1, it means they have spina bifida at the 5th lumbar and first sacral vertebrae. This numbering system is important, because it correlates (roughly) to the level of neurological function affected. The lower the defect, the less neurological damage (usually, but not always). Usually everything below the level of the defect is affected. Since bladder is controlled by the lowest sacral nerves, almost everyone with sb has bladder issues. Sacral level lesions often affect feet & ankles, an L5 defect might affect everything up to the knees, and so on.

You can find out your daughter's "level" by asking the neurosurgeon at her next follow-up appointment.

[chacha]

hi lisajoy,

thank you so much for answering my question and i will ask the nuerousurgeon when i see him at the end of the month , its all very new and confusing but with help from people like u i know i will find out what i need to know x x