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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,

  • 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.
  • 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!
  • 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.
  • Please do contact TOFS.  Web address is  All the details are there.  You will be able to contact other parents who have had similar problems.  I have been a member for 27 years, since my youngest son was born and it was a lifesaver for me.  I have spoken to many parents over the years I have been a member, and, although TOF/OA is generally diagnosed at birth or soon after, there are times when the diagnosis has been delayed particularly if a baby has a fistula without the atresia.  I do hope that Zac is soon better.  It sounds as though you have had a very difficult time.  The phone number for TOFS is 0115 9613092.

  • Hi, I gave birth to my baby boy on the 3rd of January this year to fin d he had breathing problems when feeding. We were flown to alder hay with hope an op could repair the tubes that were joined togeather. He recovered well but is still unable to feed. Theu did reflux test to see if it was that and even with thickened feeds it spilled over n to his lungs a bit. They now want to wait six weeks to do this again to see if it improves and if not we have to wait until 17 weeks. Im a bit scared and worried as he has to be in hospital on a tube which is upsetting. We have a two year old at home so we have had to juggle seeing him in hosp and looking after our daughter. Is there any hope that tofs child can eat by mouth after six weeks is this a life thing being on a tube?

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