My daughter’s brain was falling out

'Watching our girl, it was hard to believe anything was wrong'

A routine check up ended in brain surgery for Lauren’s little girl.

Here, Lauren Tyrrell, 36, tells the story in her own words.

Mum, I need an eye test!’ my five-year-old daughter Ava said one day after kindy. ‘Do you?’ I said, surprised.

It turned out that her teacher had told the class they should get their eyes checked before they started school. I should probably get all the girls done, I thought.

So in January last year, I booked tests for Ava and her big sisters Makayla, then eight, and Alexis, six.

I got an appointment for Alexis first, and spots the following day for her sisters. Waiting with Alexis, I expected her to pass with flying colours.

family photo
Mark, Ava, Makayla, Alexis and me (Credit: Julie @ Beneath the Willow Tree)

‘This is to check the pressure,’ the optometrist explained, firing a puff of air into her eye. ‘Wowsers!’ he exclaimed, looking at the result. ‘That’s high. It must be wrong.’

Repeating the test, the reading was still off the charts. What did it mean?

Using a bright light, he took photos of Alexis’ eyes. ‘It looks like she has some swelling on her optic nerve,’ he explained to me.

And, when her eyesight was checked, Alexis was actually long-sighted too. Ordering her some glasses, I was blown away. She’d never mentioned anything about not being able to see or having headaches. ‘Does your head hurt?’ I asked. ‘No,’ she replied. My girl is absolutely fine, surely? I thought.

Still, we were referred to our local hospital. My husband Mark, 34, and I were no strangers to medical appointments.

Makayla had been born with a congenital heart defect, needing three major operations and heaps of check-ups.

So, over the years, we’d learned to take things as they came. ‘I’m not too worried,’ Mark said. ‘She doesn’t seem sick.’

Watching our girl happily playing with our dogs, Jasper and Lucy, and our cat, Cuddles, it was hard to believe anything was wrong at all.

My beautiful girl Alexis (Credit: Julie @ Beneath the Willow Tree)

With an infectious giggle, she was the loudest of our kids and was never shy to tell us how she was feeling. ‘If she was sick, she’d tell us,’ I agreed. ‘And after Makayla, surely lightning can’t strike twice?’

A week later, the specialist said Alexis needed more tests. So, two weeks after that, we found ourselves at Geelong Hospital, trying to coax our girl into an MRI machine. ‘They need to look inside your head,’ I explained to her.

But after seeing Makayla in hospital, Alexis was very wary of doctors. ‘It’s too loud,’ she said, scared. Because Alexis was otherwise fit and healthy, the doctors were willing to let her take her time.

After more failed attempts over the next few weeks, she was eventually booked in last July to have the scan under general anaesthetic. Waiting for her to come out, I checked the time.She’s been in more than two hours, I realised – almost an hour longer than expected.

When it finally finished, Alexis was immediately admitted to a bed. Then a specialist told me what they’d found. ‘There’s a problem with where Alexis’ skull connects with her spine,’ she said.

My precious girl had been born with something called Chiari type 1 malformation.

Instead of being in her skull, part of Alexis’ brain had been pushed down her spinal canal. It was as if her brain was falling out of her head.

The condition was causing fluid to build up in her head, which could cause brain damage. In fact, it was amazing that Alexis hadn’t had any symptoms.

‘It’s a good job she had that eye test,’ the doctor said. ‘Otherwise we wouldn’t have known about it until she got very sick.’

It was a lot to take in. After everything with Makayla, we’re doing it all again, I thought, shocked.

Calling Mark, he rushed to the hospital to be with us. The next day, Alexis was transferred to the Royal Children’s Hospital in Melbourne. After a couple more days of tests, doctors told us they’d be putting a device in Alexis’ brain to monitor the pressure. Hearing she needed brain surgery, I broke down.

hospital therapy dog
Alexis with a hospital therapy dog

‘She’s so healthy!’ I sobbed. It didn’t seem real. ‘What do we tell her?’ I said to Mark. She was already scared enough of hospitals.

Carrying Alexis down for her anaesthetic, I told her they were just going to do something to her head. ‘It’ll be fine,’ I promised.

But my poor bub was terrified. ‘Mummy and Daddy would have it for you if we could,’ I told her tearfully.

Me and Alexis in recovery (Credit: Supplied)

Thankfully, we managed to soothe her, and after three hours we were told the procedure had been a success. The device showed the pressure was still building, so three days later, Alexis was back in theatre.

This time, she needed a shunt fitted in her brain to drain the fluid. After another anxious wait, Mark and I were so relieved when everything went well. Alexis had a huge bandage on her head, but she was soon back to her usual cheeky self.

One year on, Alexis, now eight, is like any other happy little girl. The shunt has stopped the pressure building up, but she may have more surgery in September to reduce it even more.

Every day, I’m so grateful I took her for that eye test. If I hadn’t, we might not have been so lucky.

Read more in this week’s issue of that’s life!, on sale now.

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