NO BRAINER
Emma Cooper, 42, from Blackburn, wasn’t prepared for what lay ahead...
Butterflies fluttered in my tummy during my 20-week scan.
‘You’re having a girl!’ the nurse beamed at us.
‘Another girl!’ I laughed to my husband, PJ, 34.
We already had three daughters – Aliscia, 19, Anya, 17, and Amber, eight – and when Alice, now seven, was born, she fit right in.
But after about eight weeks I noticed that something didn’t look right with her.
Alice was straining her neck a lot and struggling to swallow.
She would cry through the night and I was back and forth to the hospital with her. ‘She’ll grow out of it,’ I was told. By the time she was three, Alice was using her own coping mechanisms to deal with the pain.
When she was eating, she pulled her neck into her shoulders like a turtle and tilted her head back when she tried to swallow.
But every time I went to the doctor, I was sent home.
When Alice was five, I would often come home to her lying on the sofa, unable to move.
‘It feels like I have cramp in my neck, but it won’t go away,’ she wept. The pain got worse, and sometimes it was so bad we had to help her put her pyjamas on. In July 2017, she was finally referred to see a chiropractor.
Alice turned her head from left to right, wincing in pain.
Then after an MRI scan at Glasgow Children’s Royal Hospital, we had news. ‘Alice has Chiari 1 malformation,’ the doctor explained. ‘Her brain has attached to her spine and is being pulled out of her skull.’
‘What does this mean?’ I said.
‘She will need brain and spine surgery straight away.’
My head was spinning when I thought of Alice having surgery. There was only a 40 per cent chance of survival. I thought about how I was going to tell my little girl that she needed surgery, but PJ and I had come up with a way to soften the blow by booking Alice’s dream holiday before the operation. We sat her down to tell her what the doctors said. ‘You are going to need an operation to fix your head,’ I said. ‘I can’t wait!’ Alice said, crying tears of joy. She was so relieved to not be in pain anymore. ‘The operation will be in a couple of months, but first, we’re taking you to Disneyland!’ I said. She squealed in delight. So off we went for a six-week holiday to Florida. When we came back, we headed to Glasgow Royal Children’s Hospital where Alice was set up for surgery. I squeezed Alice’s hand as she had metal bolts attached to her head to help prepare for surgery. She had her waist-length hair chopped for the operation, but she was still so cheery. ‘I love you so much, I will be here when you get out,’ I said. As I sat in the waiting room, every minute felt like a day. After seven hours, a nurse told me that it had been a success. I walked into the ward to see Alice grinning. ‘Look at me now! I can do anything,’ she said, leaping out of bed. It was great to see her so happy. She will never lose the condition and will need MRI scans every six months to check on her progress, but the pain is now completely gone. PJ and I couldn’t be prouder of our brave girl.
Her brain was being pulled out