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Adorable baby Priah’s unusually shaped head was hiding something frightening.
Here, Justyn Hill, 23, tells the story in her own words.
I’d already had one shock. Despite taking the pill religiously, I had fallen pregnant. Now my mum Wendy was with me at my first ultrasound and she was leaping towards the screen.‘There’s two!’ she cried, pointing out the tiny dots.
When the sonographer confirmed I was expecting non-identical twins, excitement and fear flooded through me at the same time. I’d been studying construction at TAFE and working in a servo, but not long enough to be eligible for paid parental leave. Then my relationship broke down. ‘How am I going to do this by myself?’ I asked Mum, as my bump grew. ‘You’re not, you’ve got me and your three sisters,’ she said. ‘We’ll do this together.’ True to her word, Mum, Jess, Corey and Gracie were by my side when I had a caesarean.
Baby Morgan arrived first with an adorable grunt, followed by a screaming Priah. ‘This one’s going to be trouble!’ Mum chuckled. My two little doves, as
I called them, were absolutely perfect. But the next day while I was burping Priah, I noticed something. ‘Her head looks squished,’ I said to the surgeon. The base of her skull was long and pointed and her forehead was bigger than her sister’s. ‘That’s normal for multiple births,’ he reassured me. ‘They’ve been in a very confined space. She’ll grow out of it by four months.’ I wasn’t worried. At home, Priah was such a happy little girl and of course I didn’t care how she looked. Other people noticed though. ‘What’s wrong with her head?’ one stranger asked, peering into the pram. ‘She was born that way,’ I said proud of my bub. ‘Nothing’s wrong.’
The girls would lie on their tummies facing each other, giggling, and Priah loved bath time with her sister. One day when they were six months old, I got them out of the water when Priah had a complete meltdown. As I changed her into her pyjamas she was crying so much that she started hyperventilating. Unable to soothe her, I rushed her to hospital. There, she suddenly stopped breathing. I was beside myself as the doctors worked on her tiny body. When she was finally stable, one came to speak to me. ‘Has her head always been that shape?’ he asked. ‘Yes, from birth,’ I replied. ‘Have you heard of craniosynostosis?’ he said. He explained a baby’s skull is made up of seven bones with sutures – or gaps – between them. The sutures don’t normally fuse until the bub is around two years old to allow the brain to grow and develop. But in rare cases, the sutures fuse into bone early, meaning as the brain continues to get bigger, the head becomes misshapen. Craniosynostosis could cause seizures too, which explained why Priah had stopped breathing.
In tears, I called Mum. ‘What do I do?’ I sobbed. ‘Be there for her,’ she said. It was devastating when Priah was transferred to Princess Margaret Hospital and I had to leave Morgan with Jess in Karratha 2000km away. ‘She’s not sleeping without her sister,’ I told her. ‘How’s Morgan?’ ‘The same,’ Jess said. ‘I have to lie next to her on the floor.’ A few days later, an MRI confirmed Priah did have craniosynostosis. The specialist said she’d need surgery when she was a bit older. For now, all we could do was go home. Reunited, both girls were back to their boisterous ways, chasing each other around the house. They have no idea we’re going to have to separate them again, I thought. In time, a Cranial Vault Remodel (CVR) was scheduled for when Priah was 11 months old. Surgeons would cut open her head from ear to ear. Then parts of her skull would be removed and her head would be reconstructed to make it round. They’d leave three holes the size of thumbnails that would close over time. ‘She’s going to look like Frankenstein,’ I worried to my sister Corey. ‘She’s going to look beautiful,’ she said.
In theatre, I held Priah in my arms as she was given anaesthetic. Three hours on, I was allowed to see her. Her poor face was badly swollen, but I could already see she looked different. When she was well enough, I put Morgan in the cot with her. They squealed happily and babbled away. Amazingly, when Priah was discharged she didn’t even need a helmet and a few weeks later, we celebrated the girls’ first birthdays.
Priah will need to have check-ups right through until adulthood so Mum has set up a GoFundMe page to help with the costs.‘I want to give this little warrior the best chance she can get,’ she said. It’s hard to believe what my girl’s been through. She’s so cheeky, she takes her socks off and runs around laughing! Best of all, my little doves have each other.
Donate at gofundme.com/priahs-journey
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