Family cherishes every day with Charlie
CHARLIE Tiger Bailey is finally sleeping in his own cot, but his bedroom isn’t your typical two-year-old’s.
‘‘It’s like a little hospital,’’ his mum Katie says.
Next to the books and toys is a cupboard full of sterile packets containing tubes, dressings and other medical devices necessary for Charlie’s specialist care.
The Upper Hutt boy was born with a birth defect called tracheo-oesophageal fistula, which means his oesophagus – the pipe that enables you to swallow – did not form properly. One in 5000 babies has this, but most have a short gap that is easily joined. Charlie’s was much bigger at six centimetres.
The Dominion Post first met the Baileys in December at Wellington Hospital’s intensive care unit, where Charlie was recovering from a nearly eight-hour operation to join his oesophagus together.
In the past five months they have spent just three weeks out of hospital.
‘‘I think at the end of the day we’re really lucky he’s still alive because he’s had a lot of really, really close calls in intensive care,’’ Mrs Bailey said.
They arrived home on Saturday from Starship children’s hospital in Auckland, where Charlie had his 28th surgery after his right lung became infected following a procedure to prevent his oesophagus from narrowing at the join.
‘‘We had several days there where we really thought we might be getting close to the end with him,’’ his father Bede said. ‘‘We always had this belief that there were a lot of kids worse off than Charlie with cancer and heart issues, but the social worker said you’re spend- ing a lot more time in intensive care than those kids.
‘‘That brought it into perspective for Katie and I, that we need to enjoy every day we’ve got with him and that, although things might turn out really well, there’s always going to be a risk.’’
Charlie’s oesophagus is still intact, but his journey is far from over. ‘‘Basically he’s one lung down after what happened three weeks ago, Mr Bailey said. ‘‘He’s still quite weak but can walk.’’
Charlie faces more procedures to prevent his oesophagus shrinking and it’s unknown whether he will talk.
Eating is also a long way off due to severe reflux – he still feeds through a tube inserted into his stomach that is connected to a drip and pump, which he carries around in a little backpack.
He’s taking steroids in an attempt to keep his oesophagus open, but these have caused his cheeks to get chubbier and hair growth on his forehead.
The Baileys are grateful for the support of family, friends, and the community and for the hundreds of medical staff who had taken care of Charlie.
‘‘Every bloody taxpayer has got a stake in this kid because his care is so expensive, so the opportunity to say thank you to so many people we take with both hands,’’ Mr Bailey said.