Through the eyes of Gabrielle and Dan, this is the story of their baby girl, Addie. A journey marked
by uncertainty, resilience, and hope, as their family navigates a craniosynostosis diagnosis and life changing surgery in her first year.
We welcomed our beautiful daughter, Adelaide (Addie), in October 2024. At just one week old, we noticed her fontanelle seemed unusually small, along with a ridge running from her forehead to the back of her head. Despite raising concerns early, we were reassured that she will “grow out of it”.
By four months old, during a routine immunisation visit, a baby health nurse immediately recognised that something wasn’t right and arranged a referral to the Royal Children’s Hospital in Melbourne. After travelling four hours from regional NSW for our appointment, Addie was diagnosed with Sagittal Craniosynostosis, which would require surgery.
On the drive home, we began searching for support and found Craniofacial Australia. The care package we received, along with emotional and financial support, made an overwhelming time feel far less isolating.
After further scans and specialist appointments, we faced the anxious wait for surgery. With just two weeks’ notice, Addie was scheduled for Total Cranial Vault Reconstruction in November.
It was a long and difficult day, complications during surgery meant Addie was taken to ICU. We were finally met with her, showing swelling, tubes and wires. This was overwhelming to say the least. In the days that followed, both her eyes swelled shut, but throughout it all she remained incredibly brave, while charming everyone around her.
Just before discharge, one eye opened, and her bright, cheeky personality returned instantly. After five days in hospital, we finally brought her home to her very excited big sister.
Without the support of Craniofacial Australia, both financially and emotionally, our journey through Adelaide’s diagnoses, surgery and recovery would have been far more traumatising and financially draining for us all.
Now, five months post-surgery, Addie is thriving. Her hair has grown back and her scar is barely visible. You would never know what our brave girl has been through.
Every craniofacial journey is unique – filled with challenges, triumphs and everything in between. Every face has a story to tell. By volunteering to tell yours, you’ll not only honour your own experience, but also give hope and encouragement to others walking a similar path. Whether you’re a parent, sibling or supporter, we’d like to hear from you. As a story volunteer, we will make sure that your story is told in a way that suits you.
