hi Jane,
im Alice im 20, and i was born with long gap OA and also needed the colon graft,luckily mine was sucessful. its really bad about yours!! omg.

i too only have problems with needing a drink with food, but i also hav respiratory problems as my op’s had caused a diaphramatic hernia so my lung never grew enough. i have pretty big scars and used to feel consciuos about them but now im proud of them! if we didnt have them we wudnt be here!!

im an art student and my work at the mo is bout my scars and feelings bout them, i made a post about it and put a pic of one of my paintings up on it, have a look if your interested?? it in tofs to teens then TOF/OA ART

love Alice x

Hey All,

I’m Julie 25 year old with VACTERL TOF/OA from Australia. would be happy to talk with others I can be contacted on

Hi everyone,

I’m Diane - I work for TOFS and we’re really pleased that we’re getting so many adult TOFS joining us recently.

It’s particularly heartening for parents with new-borns to hear positive news from people who have acually ‘been there’. 

I see there was some talk of a meet - did you ever get one organised or would you like some help in doing so?  Please get in touch if you would, either on the forum, or give us a call at the office.

Do keep those posts coming, we know they offer invaluable encouragement.

All the best,
Diane at TOFS