Changing Faces, Changing Lives

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.

Thank you to Abigail’s Mum Tamara for sharing Abigail’s story.

When Abigail was born we noticed that her head was longer than usual instead of being round. This was uncommon for a Caesarean birth. We mentioned something to the nurses and had the Paediatrician check it out as we could also feel a ridge at the top of her head. We were mindful of the shape of her head because at 6 months old, Abigail’s dad had craniofacial surgery.

After further testing, Abigail was diagnosed with Sagittal Craniosynostosis at 6 weeks old.

We were referred to the Brisbane Children’s Hospital who put her on the waiting list for surgery. At 9 months old, we got the call we were waiting for.

Abigail went in for her surgery in June 2025.

Throughout recovery, she was super brave. She amazed the doctors with the limited swelling and return to normal self and was even released a day early! She has continued to thrive each day since then and looking at her now without knowing her story, you wouldn’t have known she had gone through what she had.

She will continue to be our Cranio Warrior!

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Sagittal Synostosis

Stories

Archie’s Story

Sagittal Synostosis

Archie was born via C-section. The midwife commented on Archie’s large head size and Mum Georgia recalls that this was the first comment in regards to her sons head. The family was over the moon with healthy baby Archie and loved seeing the instant connection between him and his older brother, who was 3 at the time.

Ava’s Story

Sagittal Synostosis

Ava, now 2, was diagnosed at birth with Sagittal Craniosynostosis after nurses noted unusual ridging along her head. She was seen to promptly by the craniofacial unit.

Benji’s Story

Sagittal Synostosis

Weeks after second son Benji was born, Natalie’s world went into a spin. After being admitted to hospital for an unrelated virus, a paediatric doctor observed Benji’s head shape and referred him to a specialist team at the hospital.

Cathy’s Story

Noonan Syndrome, Sagittal Synostosis

Cathy was born in 2020 in Adelaide, South Australia. At birth, it was noted that she had prominent ridging of the sagittal suture, along with dysmorphic features. She was immediately referred to the Craniofacial Unit, and had genetic testing recommended.

Cruz’s Story

Sagittal Synostosis

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.

Darcy’s Story

Sagittal Synostosis

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.

Ella’s Story

Sagittal Synostosis

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.

Freddi’s Story

Sagittal Synostosis

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.

Gabriel’s Story

Sagittal Synostosis

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.

Gordon’s Story

Sagittal Synostosis

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.

Hamish’s Story

Sagittal Synostosis

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.

Harper’s Story

Sagittal Synostosis

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.

Harry’s Story

Sagittal Synostosis

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.

Huxley’s Story

Sagittal Synostosis

"Team Huxley" was created by baby Huxley's Uncle Baxter while juggling Year 12. Baxter rounded up twenty of his family and friends to walk or run the Adelaide City-Bay on Sunday 15th September 2024.

Zayne’s story

Sagittal Synostosis

Zayne came via emergency C-section. He went into fetal distress and we lost his heartbeat. He was rushed in for an X-ray within an hour of being born as they noticed that his head was not the correct shape. He was also resuscitated at birth.