Saturday, 26 September 2015


We drove back from the hospital. A theatre emergency had called my daughter’s consultant out of his clinic, which meant that an appointment and X-ray that should have taken around one hour ended up taking four. But we were on our way home.

My girl chatted away, asking her usual litany of questions, which I did my best to answer, although my mind was racing. I’d just been told something unexpected and frightening. She’s got to have another operation.

It was there again: that low-level panic I remember from before. It sat in my stomach like a sleeping snake, ready at any moment to unfurl and slide up and squeeze me by the throat. 

She, on the other hand, was happy. “Dr Gavin said that if ever there was anything wrong later my metal rods might have to come out of my back, didn’t he?” she reminded me, recalling, pretty much word for word, a conversation she’d had seven years ago.

“You’re right,” I answered, keeping my voice neutral and calm. Putting my game face on.

When my daughter was 10, she had a spinal fusion. Titanium rods were bolted into her back to help straighten, anchor, and fuse her spine, which had been bent by scoliosis into the shape of a C. We spent an unbearable, unthinkable day in a hospital room waiting to hear if her if her operation was a success. The risks were terrifying: fractions of millimetres were involved, and if something went wrong, paralysis was a possibility. But the surgeon came out of theatre, sweaty and exhausted, and smiled, and the relief, the relief, the relief.

So now we face a repeat. Like a one-off Christmas special after that Bafta-winning drama of seven years ago. The metalwork needs removing. She’s been having pain for about a year, very occasionally at first, more frequently in recent months. The high pain threshold from her Prader-Willi Syndrome means that if my daughter says something hurts, the chances are anyone else would be in agony - so we got it checked out. And after months of infuriating delays and clinic cancellations yesterday we finally got our answer. Her CT scan results revealed the bolts at the top of her spine are pressing on nerves, which is causing the pain across her shoulders. They need to come out.

“Will my back be bendy again?” my girl asked. She was wide-eyed, not with snake belly panic like me, but with excitement, partly because she’d just watched a Topsy & Tim episode where Topsy had her appendix out, but mainly because she kind of likes hospitals.

“No,” her specialist explained. “The spine fuses after the operation, so it’s already set. The bone is straight and the metal isn’t actually doing anything now, so no, your back won’t be bendy if we take it out.”

She nodded, satisfied. “Will I get lots of presents when I'm in hospital?” The girl can prioritise, I’ll give her that.

It’s a two hour op, not a seven hour one like when the rods were inserted. The waiting list is about three months (although I’ll believe that when I see it). She’ll have to have six weeks off school.

I’ve calmed down a bit. We can do this. When I say ‘we’, it’s me and her dad I’m trying to give a pep talk to, because I already know she can do it. We deal with things the best we can in her determined, amazing wake.

I’m letting sleeping snakes like, for now.

Song is Etta James - Crawlin' King Snake


  1. I feel for ya.This is what happened to our lovely girl after 7 years,but because of an abscess ,rather than nerve pain.As ever ,you write exactly what it feels like from a parents perspective much better than I could ever express it .XX

    1. Thanks, m'dear. The snakes are currently lying low.