- When Kaylee Noakes’ son, Jace, began complaining of a headache she never thought he’d end up fighting for his life.
- Diagnosed with an arteriovenous malformation which had ruptured in his brain, he had a clot in the cerebellum.
- It caused catastrophic damage but Jace fought hard to survive.
Here Kylee tells her story in her own words.
Bounding into the kitchen after school one day last August, my son, Jace, eight, turned to me.
‘Mum, can I go next door and play?’ he asked.
‘Sure,’ I said, but five minutes later, he was back.
‘I’ve got a bad headache,’ he said. ‘I’m going to go to bed.’
‘I’ve got a bad headache,’ he said.
Also mum to three other kids, Tanesha, 16, Izzy, 14, and Trinity, 12, I’d normally brush off something like a headache, but as Jace never complained and was almost in tears, alarm bells rang.
‘Have a shower first,’ I suggested, thinking cool water might help.
He seemed unsteady, so I helped him to the bathroom and sat him down in the shower.
‘I’ll grab a towel,’ I said, stepping out for a moment.
When I returned, he was on the floor, motionless.
‘Jace! Are you okay?’ I cried.
‘No,’ he murmured.
I rang my husband Michael, 43, who was taking Tanesha to a dance class and Izzy to an art class, to fill him in.
‘Get home, I’m calling an ambulance!’ I said, then dialled emergency.
‘Is he conscious?’ the operator asked.
‘His eyes just rolled back!’ I cried, trying to wake my boy. ‘Jace, stay with me!’
‘I’m calling an ambulance,’ I said, dialling emergency.
Paramedics arrived 18 minutes later and rushed us to Ballarat Base Hospital, Vic.
There, I watched helplessly as doctors and nurses put Jace on a breathing machine and gave him a CAT scan.
‘We found a bleed on his brain,’ a doctor said when results came back. ‘We need to get him to the Royal Children’s Hospital in Melbourne for surgery.’
We were taken there by ambulance, sirens blaring.
En route, the neurosurgeon called.
‘We’ll insert a drain to relieve the pressure on his brain, but I need your verbal consent now.’
‘You have it,’ I said.
I called Michael and he got his sister to stay with the girls and raced to meet me at the hospital.
‘We’ll insert a drain to relieve the pressure on his brain, but I need your verbal consent now.’
As soon as we got there, Jace was wheeled into surgery.
Michael arrived and I collapsed in his arms.
Hours later, the surgeon emerged. ‘He didn’t hit his head. An arteriovenous malformation (AVM) ruptured in his brain,’ he said, explaining Jace had likely had it since birth.
‘You putting him in the shower saved his life. If he’d gone straight to bed, he wouldn’t have woken up,’ he added.
An arteriovenous malformation is an abnormal tangle of blood vessels that causes issues with connections from arteries to veins in the brain. AVMs can lead to tissue damage and the death of nerve cells. They mostly form prior to birth. AVMs occur in approximately three of every 10,000 people and bleeding from an AVM most often occurs between the ages of 10 and 30.
Symptoms of AVMs include:
• Sudden, severe headaches
• Vision changes including decreased, double or blurred vision
• Seizures
• Muscle weakness
• Decreased sensation in any part of the body
• Speech issues
• Lethargy, disorientation, dizziness, and irritability
• Stiff neck
Visit brainfoundation.org.au
What is Arteriovenous Malformation (AVM)?
He said that a brain AVM occurs when blood vessels form incorrectly.
The cluster had burst, causing a clot in the cerebellum, which controls movement and coordination.
It meant we didn’t know if we’d get our old Jace back.
A week later, the clot was taken out in surgery.
It was successful, but the AVM had caused catastrophic damage.
When Jace opened his eyes after seven days in a coma, he looked at me as if I was invisible.
He couldn’t move, talk or swallow.
‘Jace, I know you’re still in there,’ I whispered, but it wasn’t until he smiled two weeks later that I could breathe again.
Jace had to stay on a feeding tube and relearn how to eat, walk, and talk.
Once a chatterbox, he had to blink once for yes and twice for no.
I stayed with him 24/7 while Michael took care of our daughters at home.
Jace made fantastic progress, saying a few words, walking a little and eating soft foods again.
After 12 weeks, however, he became irritable and I could see his mental health was declining.
‘Can we continue his therapy at home?’ I begged the doctors. They agreed.
Within a week of being home, Jace’s progress soared.
He got around with a walker and spoke more confidently. And today Jace, now nine, is even at school part-time.
I’m overwhelmed with gratitude to the staff who saved his life.
His recovery has been miraculous.
I’m glad I trusted my gut that day.
My mother’s instinct to make him take a shower instead of going to bed helped save my son’s life.
