anyone have a child with TOFS? just wondering what the prognosis is for my little boy. he's 13 months old and they've only just found he's got a fistula. the 6 bouts of aspiration pneumonia and 13 month long chest infections wasn't a big enough indication there was a problem!

Hi Robynsmummy, As a children's nurse i have looked after a few children who have a had a TOF (tracheoesophageal fistula) It is usually diagnosed at or soon after birth as the babies often have problems breathing when feeding. I have not come across a child diagnosed so late though. The little babies have a repair operation and are slowly weaned back onto oral feeds. I now work in A&E and mainly come into contact with ex-TOF children as a result of food being stuck in their oesophagus (food pipe). This tends to be a large piece that they haven't chewed properly and they quickly learn to do it the right way next time!

I can only assume that the fact your son has got to 13 months old before being diagnosed (despite the illnesses) means he must have a fairly small fistula and that hopefully the repair operation and recovery will go smoothly. Have you been referred to a specialist yet?

Hope this helps,

Katstar

hi! thank you so much for the reply. zac's always had problems with his breathing and feeding but it was always put down to having severe reflux. it was only after they did his fundo that it became apparent something else was going on when he ate or drank anything. a swallowing study came back ok but he had a clear chest before going in for videofluroscopy and straight away it was possible to hear him rattling away. they did a chest xray well over an hour after and found "something" but it was likely to be "nothing" we were told to leave him a week to see if it turned into a chest infection, sure enough it did and he ended up back in A & E and the chest xray confired the "something" had grown into a lovely infection. as he's already under gastro's and surgeons we've got an appointment very quickly, this thursday coming. they've said their pretty certain he has a fistula but want to do more tests to be 110%. i just want to make sure i've got enough background info to ask the right questions and get things moving. it took 12 months for them to realise that his reflux was getting too out of control. all they ever wanted to do was wait and see and come back in 8 weeks. we've had nothing but a struggle with the doctors. i have to say though the nurses have been fantastic and if it wasn't for one of them who got us the right consultant for a second opinion zac wouldn't have had his fundo. we owe her alot.

Hi Robyns Mum

My little boy is 15 months old and was born with TOFS, They realised at birth, so we had an op when he was a day old. Max is in and out of hospital and to date has had 7 operations, if I can be of any more help just let me know x x

Shelley & max

back in hospital after zac ate a chip and it's caused an infection in lungs. reg we saw in A&E tried to convince me he understood but told me zac's infection was due to change in weather! i said it was funny how the weather could cause your chest to start rattling as soon as you've swallowed a chip! he looked puzzled. i really got the impression he had never met or seen a TOF baby, let alone one as old as zac that hasn't had it corrected!

Have you ever visited http://www.tofs.org.uk/index.php ? If not I wholeheartedly recommend it and if you join up you can chat to other parents of TOF children- it's quite an active board and has a great social side to.

ps. I'm not a parent of a child with TOF but am a neonatal nurse and specialise in looking after parents whose newborns are having surgery so have seen a lot of TOFs. Like Katstar, I have never come across such a late diagnosis but I have heard that it can happen and it sounds like poor Zac has had all the classic symptoms all along. I really hope he's getting better at swallowing food again and that the chest infections have stopped. he other TOF forum parents can give you amazing advice on coping with "stickies" and chokes.

thanks for the responses. zac still is getting the pneumonias as they were unableto find the tof at the endoscopy done on 1st july. they beleive it's been ruled out by over 60% and are looking at lyngeal cleft now. problem is he needs a rigid broncoscopy and since 1st july he's hand 4 dates. all cancelled due to being too ill for anesthetic.. getting really down about it as i know why they can't do it but he's only ill because he's getting food or drink form any source he can!!!! he's 18months old and knows he's been treated differently to his sister! he keeps drinking bath water or from puddles outside! i even caught him taking food from robyns plate and hiding it!
i keep telling them that as soon as the antibiotics have kicked in they've got about a week or two at the most before he'll start being ill again and they just say they will fit him in when they can. out appointment now is another 5 weeks!!! i keep having nightmares about the times he's been onthe critical list and then there's times that i feel totally ashamed of myself as a parent because i have to explain to the doctors "why" he's become ill again. i feel i'm being blamed for not wrapping him up in cotton wool (mind you he'd probably eat that) and watching him all day long. i don't want to create a negative attitude towards food and drink by telling him off for wanting what everyone around him is eaing.