Story

Family of a baby with sagittal synostosis

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.

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Little girl with sagittal synostosis sitting surrounded by her siblings

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.

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Baby with sagittal synostosis sleeping, held by his mother

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.

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Baby boy with sagittal synostosis outdoors with his parents

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.

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Little boy with sagittal synostosis

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.

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Girl with sagittal synostosis asleep, wearing a bandage on head following craniofacial surgery

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.

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Little girl with cleft lip and palate post-surgery

Flora’s Story

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.

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Little girl with sagittal synostosis

Ella’s Story

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.

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