About

You are 24 weeks pregnant, your unborn child on the cusp of viability. You are pushing 40 and shouldn’t be pushing her out for another 16 weeks. This isn’t your first pregnancy, but you’re yet to hold a living, breathing newborn in your arms.

On Easter morning, you awake to the crippling spasm of contractions. Five minutes apart. You know you must contact the labour suite, but you’re too petrified to articulate what is happening – it feels like the beginning of the end.

That was me in April 2018, and this is the tale of the conundrum that is my darling daughter, Matilda. She is the most joyful child imaginable, but her future is uncertain. She is outwardly the picture of health, but her kidney function is less than 30%. She’s sharp as a dart, but her hearing is distorted due to Auditory Neuropathy Spectrum Disorder. For her, even the clearest speech is like listening to a badly tuned radio. She’s almost two, but she’s the same size as an average five-month-old and no doctor is sure why.

Our story starts with us entering a hospital that we were not to leave for over 100 days. Its conclusion is as yet unwritten.