After being clinically dead and surviving several near-death experiences, at just age seven, little Grovedale warrior Narkiah Bishop has defied the odds.
Before she was born, a congenital cytomegalovirus (CMV) attacked her brain, liver, hearing and blood count, leaving her with lifelong disabilities and epilepsy.
When mum Chloe Meadows, then an 18-year-old living in Warrnambool, gave birth, her firstborn’s eyes were filled with blood.
“Her blood vessels had popped – everything except her irises was red,” she remembered.
On day two Narkiah began having seizures, prompting medical staff to run tests.
“Her blood count kept dropping and she kept needing transfusions,” Chloe said.
“A lot of people thought Narkiah wouldn’t make it through the first week.”
At five-days-old, following initial confusion over her condition, she was diagnosed with CMV, which Chloe had never heard of.
“I was so scared, because I looked up CMV and everything was just death, death, death,” she said.
Narkiah was flown to Mercy Hospital for Women, where specialists injected an antiviral drug straight into her heart.
Scans revealed liver damage and brain abnormalities, including a hole the size of a 50-cent piece, with specialists telling Chloe that Narkiah could end up braindead.
“That was a big kick in the guts,” she said.
But the next week Narkiah’s life began to turn around, as she was taken off oxygen, her platelet count recovered and she smiled at her mum for the first time while she was feeding her.
“It was like she was telling me she’s got this, she’s tough, why am I the one crying when she’s going through all this crap?” Chloe said.
Narkiah was discharged on New Year’s Eve, 2013, after spending 46 days in hospital, and Chloe, who grew up in Ocean Grove, moved to Geelong to be closer to support.
Chloe struggled through the housing system to find a suitable permanent rental, gave birth to Narkiah’s younger brother Memphis and separated from her partner, all while raising her daughter.
“She wasn’t hitting her milestones on time but she was babbling, happy, eating solid food and learning how to sit up without assistance.”
But at age three Narkiah stopped gaining weight.
“She weighed the same as Memphis weighed at age one,” Chloe said.
Narkiah needed a feeding tube to help her gain weight, spent a lot of time in intensive care and went “quite far backwards”, she said.
When she was five, a bacterial infection in her lungs caused her to be rushed to University Hospital Geelong, where she was clinically dead for three minutes.
“Those three minutes felt like an entire lifetime,” Chloe said.
“We lost her briefly, but she’s strong as hell. Three days later she’s lying on the ICU bed smiling like nothing had happened.”
Now seven, Narkiah still has her “million-dollar smile”.
“She can’t walk or talk but she’s got her own little way of communicating with the different sounds she can vocalise,” Chloe said.
“She’s strong with her eyes, she likes to use her eye-gaze [communication] device, or look at what toy she wants to play with or what she wants to wear in the morning.”
The “social” youngster “adores” going to Barwon Valley School.
But she has grown to two thirds the height of her mum, who now struggles to get her in the car.
“It’s getting to the point where it’s something I physically cannot do,” Chloe said.
This often leaves Chloe, a single mum and full-time carer on Centrelink, with expensive disabled cab fares.
“There’s just so much I feel the kids miss out on because we don’t have access to transport,” Chloe said.
The National Disability Insurance Scheme has stringent criteria for cars that can be modified to support children with disabilities like Narkiah.
So Chloe has launched a fundraising campaign to buy an eligible car.
“I just want to give Narkiah the best life possible, because it might not be as long as we want it to be,” she said.
“I don’t want her to be held back by something as basic as not being able to modify a car for her.”
