We spent the next week googling, Facebook searching, calling around and trying to gather as much information as possible about this condition, all the while having no idea what this diagnosis really meant for his individual case.

I contacted Craniofacial Australia and spoke with Claire, their Family Support Coordinator. I was scattered and confused with so many questions, which she calmly answered with compassion and guided me through the next possible steps.

"Claire referred me to stories on the foundation’s Facebook page and website and shared how the foundation can support families. A care package was sent to Harry from the foundation, which made us feel less alone during this difficult time."

Throughout the experience of Harry being diagnosed, I felt I had to advocate and do my own research to understand how best to support him in the lead-up to his surgery. I had to find my own credible and relevant information through online platforms, as there were limited resources available. It was comforting to hear from Craniofacial Australia throughout the process, as they checked in on us regularly. I really felt that, aside from the amazing team within the craniofacial unit at the hospital, the other medical professionals involved in Harry’s care had little understanding of the signs and symptoms to be looking for from birth.

Moments with Harry and His Parents in Hospital

All I could think when we finally had all the information to feel calm and comfortable about what was ahead for us was, “I really hope another family doesn’t experience the same stress and confusion that we did.” I have hopes that a Resource Hub (coming soon) through Craniofacial Australia may be exactly what an extremely stressed family needs when looking for answers.

At the time of writing this, we are three weeks post-surgery for Harry. He is back to his cheerful self, and we are so relieved and thankful for the support we have received from the craniofacial team at the hospital and from Craniofacial Australia. Harry’s surgery week was the hardest week of our lives. We don’t know what happens next for us. We don’t know if our future children might have the same condition or how this condition will impact him long term.

- Written by Kate, Harry's Mum. April 2025

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