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How this nine-year-old brain surgery patient is defying the odds

Blindsided by a sudden bleed, brave Maya is defying the odds.

At first glance, gorgeous Maya Bulbulia Smart seems like any other nine-year-old as she bubbles with energy and draws pictures of her favourite animal, a cat.

But look closer and a large scar zigzags across Maya’s scalp, down between her pigtails – a permanent reminder of the night the young girl almost died.

“It’s a new-look hairdo!” laughs Maya’s mum Emma Smart, 43. “We’re going for an asymmetrical look – one long pigtail, one shorter pigtail, a scar and a bald patch with regrowth in the middle.”

Maya has no memory of the night of July 11. It was the first week of school holidays and the Wellington pupil and her brother Sammy, eight, were staying with their grandparents on their fourth-generation family farm near Ashhurst in the Manawatu-Wanganui region.

Parents Emma and Ahmed, with son Sammy, are grateful for every little step.

The little girl only knows what the doctors and her family have told her. “I got really sick,” she whispers.

Prue and Rod Smart woke around 11pm to find their granddaughter vomiting and clutching her head in pain. Within an hour, she was fitting, and lapsing in and

out of consciousness.

Maya, a fit and athletic child, was fighting for her life. Doctors later suspected an arteriovenous malformation (AVM) – a tangle of blood vessels in her brain that

were abnormally connected, forcing high-pressure blood into the veins. Like a ticking time bomb, Maya no doubt had the AVM since birth, but an overtaxed vein had finally burst, causing a massive bleed.

Back in Wellington, Maya’s parents, Emma and Ahmed, 52, got a 4.20am call – the type every parent dreads. “Ahmed answered the phone, then said, ‘Get up. Maya’s sick. We’re going to Palmerston North Hospital,’” recalls Emma.

That day had been a busy and happy one for Maya and her brother. “They rode the motorbikes, helped Rod clean out the water tanks and went to the library,” says Prue.

Maya seemed fine when she went to bed, with no complaints of a headache. Later that night, when Maya began to vomit, Prue thought it was a tummy bug. “An hour later, I knew something wasn’t right.”

Prue phoned her after-hours doctor and was told to call an ambulance. Because of their remote location, Prue and Rod had a nailbiting 45-minute wait for help.

“The paramedics kept us on the phone and asked me to check her vitals every few minutes,” tells Prue. “She was conking out and a couple of times, I struggled to feel a pulse.”

The paramedics arrived and Prue asked, “Is it bad?” “Yes,” was the reply. “Call her parents.”

Maya was rushed to ICU at Wellington Hospital to relieve pressure on her brain.

Back in Wellington, Emma and Ahmed were running to the car. “It was a very long two-hour drive,” says Emma. “There was a bit of crying and two more calls to Grandma.”

By the time they arrived at Palmerston North Hospital, it was close to 6am. A Starship children’s hospital neurological team was on its way down from Auckland.

“We went to see her in ICU,” recalls Emma. “Her eyes were open and one pupil was fully dilated. Her heart rate was flying up. It was so scary.”

Once the specialists arrived, a decision was made for them to fly with Maya to Wellington Hospital for surgery. “She was naked except for a sheet and had about 15 tubes coming out of her, then off they went – into a hailstorm,” says Emma.

Surgeons removed a flap of bone to relieve the pressure on Maya’s brain and cleared the clot around her abnormal blood vessels. Two days later, she was flown to intensive care at Starship in Auckland.

“The part of her brain affected controlled her cognition and communication, and because of that, we were told Maya may never walk or talk again,” explains Emma.

For 10 days, the young girl remained heavily sedated while her family kept vigil. Emma and Ahmed had recently opened a new business in central Wellington, the board-game café Counter Culture, but left it to be run by staff.

A turning point came nearly two weeks later. Maya opened her eyes and asked Ahmed, “Who are you?”

“I’m Papa,” he told her. Within days, she began to draw primitive pictures, first a cat, then two cats. Without speech, it was her form of communication. As time passed, the drawings grew more sophisticated, says Emma, who keeps them in a scrapbook to mark Maya’s road to recovery.

Bubbly Maya still suffers fatigue and has trouble speaking, but she’s making progress day by day.

Two months on, Maya is rehabilitating at The Wilson Home Trust in Auckland. She suffers from fatigue and aphasia, which means the damage to her brain has left her struggling to comprehend and formulate language, and things like colours or numbers can elude her.

While it could take months or years for Maya to fully recover, for her family, it’s a small price to pay.

“Each day we get a little bit more of our girl back,” says Emma. “For that, we are so thankful.”

Words: Sarah Wilcox

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