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CHARGE Syndrome

What’s that?

Charge syndrome? I’ve never heard of it and I bet most people who read this will go what?

Yes, it exists and it is horrible! Don’t get me wrong it’s taught me so many things but there are so many complications, life limiting and threatening conditions.

We arrived at GOSH non the wiser, she was in PICU (paediatric intensive care) and they were ordering CT scans MRI’s and hooking her up to all sorts of machines. By this point she was still managing to breathe through her mouth, but not through her nose, which is pretty cool. Babies are obligatory nose breathers so she’d done pretty well!

It was such a whirl wind and I was trying desperately to recover from labour, but I was 2 hours from home and no family around me.

I’ll never forget the first time they let me in to see her at gosh – she was no longer In a complete incubator and the top was open so i could see her, see how tiny she was. And she was, she was this fragile tiny human and I was devastated and numb.

I wouldn’t allow myself to get close, I was too frightened to touch her, I was convinced id be burying her and arranging her funeral.

At 4 days old my baby was tiring, she needed surgery on her nose to see why she wasn’t breathing? She was desaturating and she has yet to even be fed.

At 2am from hospital accommodation the doctors called me and said there’s no time to waste she needs surgery now other wise she will become to tired and die.

By the time I ran to theatre she was already being operated on.

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