TOFS
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!
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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
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 www.tofs.org.uk 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?