Wednesday, June 17, 2009

My TOF Baby

Maddison my 2 ½ year old was born with Tracheo Oesophageal Fistula with a distal Oesophageal Atresia. What is it?
It is where there is an abnormal connection between windpipe and stomach. The picture below should paint the picture.

When Maddison was born she was in Special Care they thought it was “wet lung” so when I had her obliviously they detected a problem but we were unaware this being our 1st baby, so we were like ‘Oh OK no worries’ I went up to my room and Chris went home to sleep.
Then the Doctor come in and said “Have you ever heard of Tracheo Oesophageal Fistula with a Oesophageal Atresia?” my answer NO?

So he draws me a picture and I understand what was happening, it sounded all too easy really!

She got transferred to the Royal Children’s Hospital where she got operated on when she was 24hours old. How they manage to open and go in between 2 tiny ribs get to her Oesophageas and repair something that is the size of a Prima straw and repair around it so there is no leaks, Crazy!

So then it’s the recovery this I have spoken about before in The Chaser= Bad Comedy, so feel free to read about that road!

But 1 in 3000 babies are born with Oesophageal Atresia so we are not alone but sometimes months and years down the track when everyone has forgotten about their condition we do feel alone. So what happens down the track, when you get home, when you start solids, when they stricture and when they stricture again.

I will continue to write about our journey, our experiences, what I’ve learn t along the way even share recipes! So we don’t feel alone in our journey.

No comments:

Post a Comment