Hi

my names Rachel,  mum to freya who was born on 10th April 2007 with a TOF/OA.  its been a tough couple of months.  she had the initial repair when she was 3 days old.  we thought that would be the end of it, little did we know that we would be in and out of hospital every 2 weeks thereafter.  she is 3 months old now and has so far had 5 dilitations,  she is having another stretch tomorrow.  the consultant thinks that reflux may be the reason why the stretches are not working so she may have to have a fundoplication next.  she is bottle fed and then topped up by ng tube. its very disheartening though as it does feel like we are making progress with her feeding then when it starts to narrow she is then only tube fed till the dilitation, then after the stretch it takes a day or two to get her bottle feeding again which is upsetting as its as though she has forgotten how to feed and sometimes gags when you put the bottle in her mouth.  I’d like to hear from anyone who has been in a similar situation to us where their child has had this many stretched early on.  ive heard the 1st year is the worst so it can only get better but think it would be a great help to know someone else who has experienced what we are going through.

look forward to hearing from you

Rachel & freya

Hi Rachel
I just made my first post and then saw yours and had to reply. I’m not sure I can offer any advice really but My daughter Eva was born on the 17th April also with TOF/OA. Her repair was done at 2 days old and thankfully her progress has been good so far and although we are struggling a bit with some reflux - thankfully she hasn’t yet needed a dilation. We go back to see the consultant in September and then face the hurdle of weaning which I’m pretty apprenhensive about.
Just wanted to let you know that there are other parents out there too! Where abouts do you live? I really hope freya is doing ok and won’t need to have to many more procedures.
Did you know she had the condition before she was born? We foind out after Eva was born and I think we’re still trying to get our heads round it all.
Let us know how Freya gets on.
Claire

hi,
  our story is very similar to yours, my son benjamin born 3/12/09, so now 6 months old, was born long gap oa, repair at 7 weeks,home at 10 weeks! 2 weeks later we was back in for a few days for 1st strecth, then home again, with severe reflux, at this time benjamin also had a little milk orally and the rest in his gastrostomy. 2 weeks later we was back in again due to another stricture, by this time benjamin wouldn’t take anyting orally, and the hospital kept him for 3 weeks and he had another 4 stretches, also the surgeon thought this was reflux related, we went home and 3 weeks we later went back for another stretch and our surgeon said he may need the reflux op… however it has now been 10 weeks since benjamin has had a stretch which is amazing we didn’t think we would make it this long, but the reflux op is still on the cards as he now has to be pump fed for 16 hrs very slowly as its the only way he isn’t sick!
I think all our babys are different, but reflux and dilatations are part of what they have, and they will be fine in the long run, we never thought we would make it this long without a stretch, so don’t worry to much, things do get better xx