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 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.
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.
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 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.
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 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.
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.
Meet Flora – a bright and resilient little girl born with a bilateral cleft lip and palate. Her family received her diagnosis during a routine pregnancy scan, and from that moment, they began a journey filled with challenges, strength, and hope.
Melbourne-based Ella was recently treated for Sagittal Craniosynostosis. Born prematurely at 26 weeks, she spent 4 months in hospital. At 3 months, Ella’s paediatrician referred her to the hospital’s Craniofacial team.
