[tri-med] Re: Spina Bifida

----- Original Message ----- 
From: <TRIER9@xxxxxxx>
> Currently we are being considered for a baby/toddler with Spina Bifida.
Has
> anyone ever experienced/know someone that has experienced this condition?

The effects of spina bifida depend on the level of the lesion. The higher up
it is the more problems there are usually. It also depends on whether there
is any hydrocephelus happening at the same time.

Some kids with spina bifida walk, some use crutches etc, some are confined
to a chair either full or part time. Some have cognitive issues, some don't.
Its really variable.

Aside from mobility and possible cognitive issues the biggest problem is
usually bowel and bladder issues. Alot of folk with SB need catheterisation.
Resultant kidney problems are a big cause of death in SB (as they are in
paraplegia - we are getting better at managing these issues though).

As far as the house needing to be remodelled - that will probably be a way
in the future. But access and bathrooms are usually the biggest problem. A
lot of SB kids stay pretty small though) Depending on the level of the
lesion the bedroom may be a sort of issue in that you may one day need a bed
with wave mattress or even a raised bed. Like all of our kids though its
often a wait and see how things develop scenario.

I have not lost my mind - it's backed up on disk somewhere.
-- Unknown

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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