Hunter’s Story
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.
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Hazel’s Story
Meet Hazel – Diagnosed with Metopic Craniosynostosis (Trigonocephaly) shortly after birth, her paediatrician recognised the signs right away. At just 6 weeks old, her diagnosis was confirmed with a CT scan, and not long after, Hazel underwent frontal-orbital advancement (FOA) surgery to reshape her skull and support healthy brain growth.
Harvey’s Story
Harvey was born with Hypoxic Ischemic Encephalopathy (HIE) in April 2023.
We were in hospital for a month before we could bring him home. I always knew something wasn’t right with his head, his eyes were not aligned, part of his forehead was flatted and one eye opened more than the other.
Harry’s Story
Harry was diagnosed with Isolated Sagittal Craniosynostosis at 8 weeks old.
We were concerned about his head shape from birth but were initially cleared by all medical practitioners involved in his paediatric care. At our 8-week-old check up with the paediatrician, I expressed my concerns and after examination, we were sent for an X-ray.
Abigail’s Story
From the very beginning, Abigail’s journey has been one of strength, courage and love. What started as a parent’s instinct soon became a life-changing diagnosis, and a path that would require resilience well beyond her tiny years.
Harper’s Story
After an emergency c-section, Mum Jessica gave birth to baby Harper, who had jaundice, causing her stay in hospital to be prolonged. At Harper’s hospital discharge, the doctors did a thorough examination and noticed her fontanelle was very small and hard to find. Harper was immediately referred for an MRI.
Hamish’s Story
Hamish’s cranio story started the day he was born. No official diagnosis, just a comment from the Paediatrician about his odd head shape. At 3 weeks of age when leaving the hospital, they mentioned the possibility that he may have Craniosynostosis but that she would confirm at his 6 weeks check.
Gordon’s Story
It was a long road for Gordon to finally get here. After many losses we were lucky enough to welcome baby Gordon, little brother to Bernie. A couple of routine ultrasounds raised a red flag around his head and ventricle size, but they were ultimately dismissed as a non-issue.
Gabriel’s Story
Gabriel was born via elective c-section on the 3rd of April 2024, at 39 weeks and 3 days. From 20 weeks gestation we were told he was measuring in the 98th percentile for all measurements (which wasn’t a surprise as his brother was the same), he was head down from around the same time and was very hard to get a clear picture of his head on ultrasounds.
Freddi’s Story
Diagnosed with Sagittal Craniosynostosis at just 1 year old, Freddi underwent a cranial vault remodelling at 18 months, supported by an incredible team of haematologists to prepare her for surgery, all without needing a blood transfusion.