Real Life

“My daughter is living with half a brain”

How could Nikki's little girl go through so much?
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Nikki Miller, 42, shares her true life story:

I stared lovingly at my newborn daughter’s face as I stroked her beautiful red wisps of hair.

But then I frowned.

“Is it just me or is that side of her face slightly bigger?” I said to Mum.

We both stared at Karley, 11 weeks, and agreed it did look a bit puffy.

I wondered if she’d been bitten by an insect or had an allergic reaction to something.

She went for an ultrasound and suddenly a swarm of doctors were standing around my baby girl looking concerned.

“I looks like a brain blockage,” one of them said.

Before I had a chance to ask any more questions, all hell seemed to break loose.

We were driven to a hospital in Canberra where another specialist ran more scans.

“It’s not a blockage,” he said, taking one look at the results. “She had a stroke in the womb, probably in the first trimester.”

How was that even possible?

“I’m afraid one side of her brain isn’t functioning. The tissue is dead.”

I was absolutely stunned.

Up until now she’d been a healthy baby.

Nothing had come up in any of my scans.

Then another doctor said she had cerebral palsy.

Karley when she was in primary school.

I was too shocked to even react.

My whole life seemed to be crashing down.

I was allowed to take her home and we monitored her closely over the next few weeks.

She met all her milestones with a slightly delay, but was generally a happy bub.

She bum shuffled until 15 months when she took her first wobbly steps.

She also loved playing with her older brother, Braidey.

By now, their dad had left us.

Luckily, my family were very helpful.

Karley also had vision impairment and was forever falling over.

We started calling her Clumsy Karley.

Once, my mum was looking after her and she fell off her first floor veranda onto the rock garden.

She had so many eggs on her head I made her wear a helmet.

When she was five, she had an operation on her heels but had a huge seizure on the operating table and nearly died.

She was diagnosed with epilepsy.

She fitted all the time.

Some of them would be frozen fits where she’d be so stuff.

Other times she’d go vacant. It was like the lighters were on but no-one was home.

Once, about 10 of her friends were round and she collapsed onto all fours and said “Mummy, Mummy,” on repeat.

It went on for ages.

She was so distressed afterwards.

Karley’s scar went from ear to ear.

One of her fits went on for so long she was in an induced coma for three days.

As the years passed, she started having debilitating headaches.

Her doctor said she had holes in her skull and the dead part of her brain was pushing through the holes.

They had to operate and remove the brain matter.

To prepare for her surgery she had to have her beloved fiery locks shaved off, so I shaved off my hair in solidarity.

In a six-hour operation an 8cm-long chunk of her brain was removed.

When she came home, she said to me, “everything is a lot clearer now, Mum”.

Best of all she’s being seizure free for over six months.

She wants to work in photography when she’s older.

I think she’d be great at that, as she’s very creative.

At least now we can make plans for her future.

We couldn’t have done that before doctors removed half her brain.

Karley now.

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