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Kiwi toddler Nova Joy's brave battle against all odds

Born at 30 weeks with a rare genetic syndrome that prevented her jawbones from developing, little Nova wasn’t expected to survive.

By Julie Jacobson
Frantic mum Acacia Hunia didn't get to see her newborn baby for almost 14 hours after delivering her by emergency Caesarean. And it was a heartwrenching 18 days before she finally got to hold her precious wee daughter.
Born at 30 weeks with a rare genetic syndrome that prevented her jawbones from developing, little Nova Joy also had a cleft lip and palate, plus missing external ear canals. She wasn't expected to survive.
As doctors battled to keep the wee girl with half a face breathing, hand-pumping oxygen into her tiny lungs for close to four hours, her anxious parents were told to expect the worst.
"The paediatrician said she was trying to die, but they were trying everything they could," tells Joseph. "They said to be aware she's a little different. It was pretty crazy."
"I was in shock for a long time," admits Acacia, whose first sight of her daughter was a photograph of her in an incubator in intensive care. "I completely shut my emotions down."
The couple knew Acacia's pregnancy might not be without complications – haemophilia runs in her family and she was under the care of a specialist team at Wellington Hospital. The blood disorder affects males, so they were elated when the 20-week scan revealed the baby was a girl.
Just days old after her first surgery
But the scan also revealed Nova had a cleft lip. "From then on, we were really only focused on that area," tells Acacia, 30. "She was hard to scan because she would have her hands across her face, basically covering up the whole area that was affected."
Little did they know then what life was about to throw at them. Nova spent her first three months in hospital, undergoing five blood transfusions and a tracheostomy surgery when she was just 10 days old. She was fitted with a nasogastric feeding tube and at two months had an orthodontic plate fitted before surgery on her cleft lip at five months.
At nine months, she underwent a jaw distraction – where the jaw is broken and a vice-like contraption is then attached to each side to gradually pull it forward.
The little girl also had a gastrostomy, a laryngoscopy and a procedure called a fundoplication, which prevents stomach contents flowing back into her oesophagus.
But despite her traumatic start, Nova, who is nearly two, is happy, cute-as-a-button and, when we visit, shuffling on her bottom across the floor at the family's Upper Hutt home.
The little charmer still needs round-the-clock care and will continue to into the future, with the help of a medical team that numbers 17 and includes an ear, nose and throat specialist, a neurologist, a paediatric surgeon, and a speech and language therapist.
Being unable to swallow, her tracheostomy needs suctioning on a regular basis to stop her choking, so along with Acacia's mum Viv, the couple have been trained in "trachy" care and baby CPR. She is tube-fed special formula via a mic-key button in her stomach, while hearing problems have seen the family learn sign language.
In hospital March 2018 for multiple procedures.
A night nurse offers the couple some reprieve.
"We've never had the sleep deprivation that other new parents have," grins Acacia.
"On the other hand," Joseph, 29, adds, "because Nova can't talk, you have to watch her all the time."
Acacia explains, "I spent so much of the first year in full alert mode, 24/7. She had a little safe cocoon on the floor that I would keep her in and literally I'd be there watching her all the time. I was too scared to go to the bathroom just in case something happened when I was gone. And sometimes it did. It took me a long time to get through that."
With her favourite doll Ruby.
A "takeaway kit", which contains emergency medical gear, including a portable suction machine, goes everywhere with the family, who agreed early on they weren't going to hide their daughter away. In fact, they are intent on giving Nova – whose name means new or star and whose middle name Joy is a nod to Acacia's "strong, awesome mum" – the best childhood and are documenting their journey on Instagram.
The account has just garnered its 5000th follower, with Nova winning hearts around the world. "It started with a mothers' group for a brand of clothing that I'd post pictures of Nova on," says Acacia proudly.
"Nova made quite an impression and it just grew from there. People want to know about her. She's very charismatic and effervescent. It helps that she's super-cute too! I thought I was biased, but she actually is."
Tells her dad, "I took a couple of photos of her when she was born but didn't post them for a few days because I thought she might not make it, but then I thought, 'No, she's here – she's a person.'"
Continues Acacia, "If we'd had a 'normal' baby, we would have, so what was different? We've always tried to look at Nova like a kid first and everything else that's going on is just secondary to her. She has her own personality and she deserves all that fun stuff that other kids have."

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