Meet Hunter
Metopic Craniosynostosis (Trigonocephaly)
Meet Hunter - Born in May 2022, Hunter was diagnosed with cleft lip and palate and metopic craniosynostosis at birth. He had his lip repaired at 6 months and his palate repaired at 11 months old.
In the early days, Hunter’s family made weekly visits to the hospital and despite the challenges, his mum Caitlyn says they looked forward to seeing their wonderful cleft team.
Before Hunter was born, Caitlyn had never met anyone with a Cleft Lip or Palate. Now, their family are passionate advocates for inclusion and acceptance “We’ve learned to see people for who they are, not what they look like.”
Caitlyn wants more awareness and education around craniofacial conditions not just for children, but for adults too. Her advice to new parents: “It’s scary at first, especially if you find out during pregnancy, but your little one will be OK. Ask questions, reach out, and know you’re not alone.”
And most of all, she adds: “Your little one will show you a strength you didn’t know existed.”
Interview with Hunter's Mum Caitlin...
Age at Diagnosis?
0
What treatment have you or your child had for this Craniofacial difference?
Hunter has had his lip repaired at 6months old and his palate repaired at 11months old.
What do you remember most about the early days of treatment?
It was weekly visits to Monash children’s, but we love our cleft team so we got excited every time we went.
How has this Craniofacial difference impacted your life and family?
It has opened our eyes to cranial differences, I’d never met someone with a cleft lip or palate, it was a new experience. Now we are huge advocates for inclusion and excepting everyone for who they are not what they look like.
Is there something you wish more people knew about this condition?
Well I’d never heard of it or seen it my self, so more exposure in schools about different Crainio conditions. Teach kids acceptance, to be honest a lot of adult can be taught too.
What is one piece of advice you would give to someone receiving a similar diagnosis for their child?
Just know they will be ok. It’s scary when you find out especially if you find out while pregnant like I did. Reach out to parents who have Been through most will happily tell you there experiences. And ask all the questions to your care team they will happily answer any questions or worries you have.
Is there anything else you'd like to share?
Your little one will show you a strength you didn’t know Existed.
Thank you to Hunter's Mum Caitlin for sharing
their story.
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