The first time Maddison strictures it was dead obvious.
She was 9 months old and she was having her pureed dinner and she choked (which is normal, as you know happens ALL the time)
She then couldn’t breathe and she turned blue. So I lay her over my knee pat her back and she brings it back up.
Then she starts choking on her bottle which is of course is liquid. So really, totally crazy and time to go and see her surgeon Tom.
It’s a day surgery and Tom says it’s very easy a minor surgery. She’ll be on puree for a couple of days then back to normal. Great, a bit scary but great.
We go in for the dilation she goes under a general anesthetic they go down with a camera via her mouth insert a balloon and blow it up to stretch her join.
It all went really well and off we went home. I wasn’t expecting the recovery time to be sooo painful for her. Chris had gone back to work because we thought it was a minor thing. Not so much!
She was crying hysterically, screaming in pain for 2 days straight. It was horrible for both of us!
But on the 3rd day she started to get better. So that was that.
So when is it time to go back?
This time NOT so obvious. We had only had appointments with her paediatrician and said she was doing great. When we told her what she can eat and what she can’t, it was all fine.
In a normal week (she is nearly 3) She will choke at least once. She can’t tolerate meat only small pieces of chicken and fish. She can still only eat pureed fruit, lollies are a no no, soft bread no, any big pastas like penne not on your life.
Raw carrots forget it!
If she has a cold Oh my goodness it gets worse! and you know how easily a TOF baby gets a cold. For a normal child it won’t be so bad but for a TOF child it’s the worst thing ever!
But we were told it was normal so 18 months go by and we have an appointment with Tom. We knew she needed another dilation it was our gut feeling so it wasn’t a shock when he said she had too.
WHAT did shock me was this: I asked him ‘OK at what point should we bring her back in?’He said ‘Most TOF parents fall into the category of safe. Parents give the TOF babies what they know the can tolerate but a TOF baby needs to progress in their foods, so we have to try them on new things and if they aren’t or can’t then it’s time to go back for a dilation!’
What The? I do give her new things but if she struggles and can’t then I will stop. She has been doing this for 18 months. She should of had another dilation 18 months ago!
Well as I felt like the most terrible parent in the world!
And Chris said “Renee there is no hand book on this, we were told it was normal. it’s not your fault”
I know that, but at that time I really felt bad for my little girl!
You know when EVERYONE around you bangs on about how good she is doing OR they totally forget about her condition because they can’t SEE it they think it’s not there. When you say no she can’t eat that, they think it’s because you don’t want her to junk or you’re just really over the top with her.
You feel like smacking them over the head don’t you!
It is there and it will ALWAYS be there and that’s OK because we have become expects at managing it and monitoring it.
THE GOLDEN RULE IS Anything with your TOF babies development see your paediatrician. ANYTHING with their join or eating see your surgeon. If they aren’t progressing go in they will need a dilation.