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Dec 5, 2017 Latest post:
Jan 18, 2018
"Though she be but little, she is fierce" (Shakespeare).
Charlotte was born with a rare condition called subglottic stenosis with laryngeal webbing. Basically, for some reason the narrowest part of her airway didn't form properly when she was about 10 weeks gestation and because of this it's like she's breathing through a straw. She gets about 25% air each breath, can get very sick very quickly and finds it hard to speak.
After two smaller surgeries when she was a baby, we were told that she would likely outgrow it by 3, but she hasn’t and her growing body is putting more and more pressure on her airway. She simply won’t be able to keep up and the increasing risk of infection could mean she ends up with a tracheostomy - so she's one of the lucky ones who gets to have a brand new airway (about 10 kids get this done a year!)
On December 6th, she will undergo a very scary but ultimately amazing procedure (for you Google Doctors out there it’s called ‘Single Stage Laryngotracheal Reconstruction’). It’s main purpose is to widen her airway and give her a chance to live a normal life - full of exercise, singing and not being stared at when she speaks because she sounds like she's inhaled helium...🙂
Dr Cheng and the incredible team at Westmead Children's Hospital will take a graft from her ribs and use it to reconstruct the area under her vocal chords (hopefully without damaging them!). It is a very intense open-throat procedure which will require her to be placed in an induced coma for about a week while they wait to see if the graft takes. After that it’s a few more weeks in hospital while she relearns how to breathe, swallow and speak with that brand new airway. We expect to be in hospital about a month, and although there's much about it that terrifies us - it's the only known cure for her condition.
We know it 'takes a village' so would love for you to join us in praying for her and the medical team and to check in here for updates as we progress. It's going to be distressing at times, but we trust our surgeon and the God who made her and are thankful that we have been given an opportunity to give her a better quality of life.