I’M HEALING MY GIRL AT HOME
Kia ra’ s defying all medical expectations
The odds were stacked against wee Kiara Milner long before she entered the world. But her doting dad Joshua Milner always knew his little girl was going to be a fighter.
“I dreamed about Kiara a lot before she was born and had a clear picture in my mind of her growing into a really amazing person,” says Joshua, 25.
Yet in utero, it was discovered Kiara had hydro encephaloce le, an extremely rare birth defect that occurs early in pregnancy, when the baby’s skull is still closing. It meant part of her brain had leaked through a cleft in her cranium and was sitting outside the base of the skull in a sac of fluid.
Doctors warned Kiara’s family that she wasn’t expected to survive the pregnancy – or if she did, she’d last a matter of days or weeks.
“I never believed that for a minute – I always knew she’d make it,” says Joshua, watching his gorgeous daughter rolling over and giggling on a rug in front of the fire at his family’s historic 1870s home on the Canterbury plains.
The much-loved cherub is now the central focus of her four-generation family, living with her father Joshua, her grandparents Angie, 47, and Kev, 53, aunt Olivia, 18, and great-grandmother Pat, 66.
Joshua – who is separated from Kiara’s mother and is her primary caregiver – says his daughter’s rare brain defect was first detected at her 20-week scan. Doctors scanned Joshua’s then-partner every week and planned a Caesarean birth to lessen the risk of bursting the sac containing part of her brain.
But two days before her planned delivery, Kiara’s mother went into labour and, miraculously, the baby was born with the sac intact.
Just minutes before she arrived into the world, Joshua says the midwife asked, “Do you want us to resuscitate?”
“There was no need to
answer that,” the young dad declares. “She was born crying and very much alive.”
Since then, the engaging, blue-eyed tot – who turns two in August – has continued to defy the odds. She was just 25 hours old when she had her first operation to remove the portion of dead brain tissue outside her skull, which was the size of an old 50c piece.
Six days later, Kiara returned to theatre to have a shunt inserted in her brain to drain excess fluid. Babies born with hy dr encephaloce le often have vision issues, hydrocephalus (a build-up of cerebrospinal fluid in the brain) and problems with the pituitary gland, which regulates growth, metabolism and body composition.
Clearinghurdles
In addition to her rare brain disorder, Kiara was last year diagnosed with a mutation of Chromosome 7 and Sonic Hedgehog syndrome, so named as the gene is spiky like the cartoon character. The gene is crucial to brain and facial development, and the placement of limbs and organs in the developing embryo.
“Most babies with Sonic Hedgehog syndrome self-abort, but again she pulled through,” says Joshua. “My daughter is a fighter.”
Although her prognosis for the future is unknown, the bright-eyed girl’s family says she’s already proven herself a miracle.
The doctors predicted
feeding and breathing problems, but so far, she has had neither. While she’s closer in size and development to a six-month-old baby, Kiara, who regularly spends time with her mother, is a charming and chatty kid who is slowly but surely reaching her milestones. She says her name and “bubba”.
“Everyone who meets Kiara falls in love with her,” grins her proud dad. “She’s just such a happy wee girl.”
The extended family pulls together to work on Kiara’s development and celebrates every small step forward.
A downstairs room in the five-bedroom home has been converted into a physiotherapy room for Kiara and she has a gruelling schedule of intensive therapy for four hours a day, six days a week.
After fundraising on Givealittle, Joshua and his mum Angie travelled to Auckland in April to train in the Timmermans Method, which applies therapies for
kids with developmental delays, cerebral palsy and brain injuries.
“We forget where she is at until her cousin Sterling, who’s about the same age, comes to stay y and at 18 months, he’s running around and trying to escape,” says Kiara’s granddad Kev. “But at the same time, her motor skills are incredible, and she’s a bright little girl who loves people and picks up a lot from facial expressions.”
“She has what we call the ‘royal wave’,” smiles doting great-gran Pat. “She always engages with people, and everyone always comes up and says, ‘What a lovely baby’.”
Although specialists have said Kiara will never sit, crawl or walk, the family refuses to believe it. In the past month, she’s delighted the busy household by sitting up unaided and beginning to crawl.
“Kiara will do everything, but she’ll do it in her own time,” insists Joshua. a. “I’ve I ve always known my daughter ter would turn out ut to be special.” .”