Cystic fibrosis – A genetic disease in which the lungs and digestive system become clogged with thick and sticky mucus …
Stomach pain …
Trouble breathing …
Must be managed with a time-consuming, daily regimen of medication and physiotherapy …
Over the years, the lungs become increasingly damaged and eventually stop working properly …
Debbie Carfax, twenty-three, was diagnosed with cystic fibrosis at the age of two and has been told she has less than …
Catching the common cold could kill this young man with cystic fibrosis as he waits for a life-saving lung transplant …
End-stage cystic fibrosis and how to manage the final days …
One in every 2,500 babies born in the UK has cystic fibrosis …
Average age of death …
Like drowning …
Just breathe.
A piece of hold music droned on, vanilla and classical, chosen to calm interminable situations.
I could feel the adrenalin rise inside me. Everything sharpening, narrowing, ready for flight as I stared at that single question.
Her levels looked abnormal.
I understood that there was a level to everything.
Under the right level, you drowned.
Above the right level, you overflowed.
Finally, a new crackle as the hold music was killed.
‘Yvonne says it’ll be something called a sweat test. You’ll need to bring lots of blankets for the baby to make her sweat. Do remember that. Blankets. And maybe some snacks and mags to pass the time?’ I had no time to reply before she said, ‘And make sure that your husband is with you. Have you got the address? Paediatric outpatients …’
‘Yes. Thank you.’
‘Best of luck.’ And with that, Kirsty was gone.
I hung up, the appointment details scribbled on the back of a tea-bag box with a free T-shirt promotion.
Make sure your husband is with you is the same thing as saying: Are you sitting down? It’s what a person says before they give you the news that will knock you to the floor and turn out the lights.
The consultant with a blunt fringe took a deep breath before she said, ‘I am sorry to have to tell you …’
The hospital, God, just the smell of the place – the mashed potatoes and disinfectant and newly opened bandages – the only way to have kept that air from crawling into my cells would have been to stop breathing altogether.
I threw up when she told us, but I made it to the sink. Still holding Mia, there was no time to pass her to anyone.
Everything emptied.
Click here to keep reading this emotional story of love and obsession …
About the Author
Hannah Begbie studied Art History at Cambridge University. She went on to become a talent agent, representing BAFTA and Edinburgh Comedy Award-winning writers and comedians for fifteen years until her youngest son was diagnosed with cystic fibrosis.
In 2015 she joined the board of The Cystic Fibrosis Trust, to raise awareness and advocate for the CF community. She also enrolled in The Novel Studio course at City University, winning that year’s new writing prize. The book she developed there became her debut novel, Mother. She has since won the RNA Joan Hessayon Award for New Writers 2018.
Hannah lives in north London with her husband, a screenwriter, and their two sons.
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Also by Hannah Begbie
Mother
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