HAS ANYONES CHILD HAD A MATROPHANOF [TUBE FROM BLADDER]

[salsmum]

Hiya,
MY DAUGHTER HAS C.P. AND IS 18.
SHE HAS BLADDER WEAKNESS AND HAS TO WEAR PADS BUT FOR 2YEARS HAS BEEN ON A LIST TO HAVE A MATROFANOPH [SPELLING SORRY] ITS A TUBE FROM BLADDER TO NAVEL AND IS EMPTIED WHEN SHE NEEDS TO GO. ITS A BIG OP THAT ONCE DONE CANNOT BE REVERSED.
THE DOC AT ST TOMMIES SAID THAT ITS A LONG, PAINFUL YEAR POST OP AND IS NOT 100% SUCCESSFUL
SOO SHE MAY STILL HAVE TO WEAR PADS [SAD].
DO WE TAKE THE RISK AND GO AHEAD WITH OP OR CONTINUE AS ALWAYS?.
MY GIRL IS VERY BRIGHT AND GETS EMBARRASSED BY PADS AND FINDS BUYING FASHION CLOTHES VERY DIFFICULT BECAUSE HER PADS ARE LARGE AND SOMETIMES SHOW AT THE BACK.
HAS ANYONE GOT A CHILD/TEEN WHOS HAD THE OP AND CAN GIVE SOME ADVICE PLEASE I WOULD BE VERY GRATEFUL..

no advice but what a hard decision to make, i hope someone on here can help you.

I know a few children and young people who have had a Mitrofanoff (but not family members).

I don't know if you already have this sort of info but this site gives facts etc

www.ich.ucl.ac.uk/factsheets/families/F050041/page2.html

If your DD is keen and wants to go ahead it may change her life (and if she is pysically able to self catheterise it can increase her independence).
If she is 18yrs it has to be her call really.

sorry I haven't heard of this at dd's school. MABS is the only one I have heard of who has do something similar. but that is with a boy.
slightly of the topic but

You know I can't help thinking that there is something wrong here.
salsmuM It seems wrong to me that we should have this worry. why can't they make descreet padded pants that work. I have just tried dd in the pants and was really pissed of to find they leak.
I have also been wondering about the tena pants theay advertise on the tv.

aig
thanks for your advice ill give that site a good read .
yes most definatly sals call and i would'nt have it any other way but the more information she has the better informed she will be, i also know that to a certain extent she likes to feel that i'm o.k. with it because i'll be the 'nurse' when needed lol! and i'll be the one that gets sworn at if the 'fallout' does occur but hopefully not .
other than her severe physical disability im lucky that she is mentally typical teen/adult!.
2SHOES..hiya.
the TENA pads can also leak i found the medium plus were nonleak but the large did . I'm afraid dunno about boys bitz with the pads but lent some to sals mate [32male] and hes ok with medium size .
They are very expensive to buy privately thou £30+ a pack. have a word with your local childrens home nursing TEAM AND ASK FOR SOME SAMPLES OF tena PADS to see how you go.
GOOD LUCK X