Babies' heads often look a bit misshapen when they're newborns – but in rare cases, it could be a sign they need urgent attention.
When Ezekiel, the newest member of the Auckland-based Rutley family, arrived in May, a doctor noticed his head shape was asymmetrical.
"We always did see that he did have a bit of a flat side on one side but we just thought he probably had a wonky head because of forceps… And he'd grow out of it," mum Leah Rutley told The Project.
But a CT scan revealed Ezekiel had craniosynostosis, a birth defect where the bones in the skull join together too early. It can develop into problems with brain and skull growth.
In Aotearoa, 175 babies are born with craniosynostosis each year.
The only treatment here is cranial vault remodelling, where the surgeon makes an incision across the baby's skull.
"When you're given your diagnosis and the only option is to remove the entire forehead of your child, you want to say, 'No thanks'," dad Stuart Rutley said.
"Looking online and Googling what he has, when we found there was a less invasive option we thought, can we make a plan, can we get there somehow?"
That option is endoscopic surgery, which has to be done before the baby is five months old.
Suddenly, the Rutleys had a fortnight to get Ezekiel to a hospital in Texas and set out to raise $85,000.
"He ends up with a small cut down one side of his head and then there's a helmet that he wears from eight months to a year. It's not a perfect science but it's a lot better than needing all sorts of extra medical intervention," Stuart said.
Dayna Tooke formed the support group Craniosynostosis New Zealand after her daughter Zigh was born with the condition 13 years ago.
"There's a lack of support out there, family and friends didn't quite understand how big of a deal it is," Tooke said.
"If you're concerned about your baby's head shape, definitely take that on and listen to your gut instinct. If you've got a concern with head shape measure baby's head once a month."
Last week, the Rutleys made it to Texas and Ezekiel had his operation.
His parents say he's like a brand new baby – happy and settled for the first time in his life.
"We hope the endoscopic surgery will be available in New Zealand at some stage or that surgeons would be able to come here and help kids like Ezekiel," Stuart said.
If you want to help with Ezekiel's medical bill click here.
