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.
17-month-old Emilia was born with a Unilateral Cleft Lip and Unicoronal Craniosynostosis. A Unilateral Cleft Lip occurs when one side of the lip has a gap, after failing to join together during pregnancy.
Darcy was diagnosed with Sagittal Craniosynostosis at four months old. This was a scary and unknown time for our family, however our Paediatrician and the whole Cranio team were incredible. They went above and beyond to make us feel at ease and provide enough information on the matter / process going forward, this was especially important to us as we had never heard of the condition.
We are incredibly blessed to have our own beautiful Cranio-Warrior, Daisy. Daisy is 2.5 years old and was born with a rare genetic syndrome; Apert Syndrome. Apert’s is caused by a mutation of the FGFR2 gene and because neither my husband or I have Apert’s, it’s a random mutation. The chances of having a rare gem like Daisy is 1 in 65000.
When Cruz was born, mother’s instinct told Bec something wasn’t right. She shares with us her incredible story to find the right answers for her son and receive the treatment he needed for previously undiagnosed craniosynostosis.
