The Price of Life by Jenny Kleeman

Author:Jenny Kleeman
Language: eng
Format: epub
Publisher: Macmillan
Published: 2024-03-14T00:00:00+00:00

CHAPTER EIGHT

£20,000–30,000 per year

The National Health Service

Edward Willis-Hall has just woken up from his nap. He lies on the carpet between the sofa and the TV in his nappy and grubby white vest, a toy pick-up truck held aloft between the pink soles of his feet. His curly blonde hair trails behind him in the thick pile. He gazes at the neon CGI dinosaurs dancing across the TV screen, until he notices his mother, Megan, coming into the room with me. A goofy grin blooms across his face.

The golden ringlets, the huge blue eyes, the plump, pendulous cheeks should make Edward look like a cherub, but there is no chubbiness to his limbs. His legs are long and scrawny, yet to crawl or kick or bear his own weight for long. He has the expressive, inquisitive face of any other sparky toddler, but his shape tells a different story.

Megan pops Edward onto the sofa beside me and puts some books in his lap while she goes to heat up his lunch. He fixes me with those beguiling eyes.

‘How old is he now, exactly?’ I call out to Megan in the kitchen.

Edward lifts up his index finger to show me he is one.

‘Nineteen months,’ Megan says, striding back into the living room with frothy coffees in glass mugs. ‘He wants to fist bump you.’

Edward has curled his finger in to make a shaky fist. He pushes it towards me to bump.

I’m happy to oblige.

‘His cousins, they taught him that on holiday,’ she says brightly. ‘Are you going to fist bump Mummy?’ He holds out his fist to her. ‘Thank you.’

At another point in history, or in another country, Edward would be unable to hold up his head, eat without a feeding tube, or breathe without a ventilator. In a different time or place, he would probably have five months left to live. But he is here, pushing buttons on his noisy books, throwing us fist bumps and eyebrow wiggles, thanks to a single dose of a life-saving drug that cost £1.798 million. And Edward got it for free, because NHS England agreed to pay for it.

But Megan had to fight for it. ‘From the word go, it’s been difficult.’ She checks herself. ‘It’s been the best thing ever. But. I hated every second of being pregnant. I had awful, awful sickness. And the birth was in lockdown, so I was completely on my own.’ Covid meant Edward’s dad, John, wasn’t allowed into the hospital when she had her labour induced. ‘Edward was five days late, and also he wasn’t moving much,’ she explains with a sad smile. ‘Now I know why.’

Newborn Edward passed the usual hospital checks without a fuss. He fed well, and only woke up two or three times a night. Megan felt lucky to have such an easy baby. But by the time he was four weeks old, she noticed he’d stopped moving his legs as much, and his head seemed floppy. Instead of developing, he seemed to be doing things less.

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