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.

Our third child, a beautiful baby boy, Cruz came into our lives in November 2012. But shortly after birth we noticed that the shape of his head was long and narrow and protruded at the front and back. As weeks and months went by the shape of Cruz’s head did not change. We tried for nearly a year to get him assessed by a range of GPs and paediatricians but kept getting shrugged off.

With continual rejection of our concerns I began to think I was just being a paranoid mother and gave up looking for an answer.

However, a few days before his first birthday we consulted a new paediatrician about something unrelated and as soon as we walked into his office He asked who we were seeing for his head, and what was being done about it? I nearly fell off my chair!

A diagnosis of craniosynostosis of the sagittal (central) suture of Cruz’s skull was confirmed that afternoon by X-rays. We were devastated to learn that Cruz would need a major skull reconstruction. Such invasive surgery for a baby – How could this go undiagnosed for so long?

Networking with other families we heard of Professor David David and the Australian Craniofacial Unit in Adelaide.

I immediately got in contact with Prof David and, although we had not yet met him in person, we felt such a sense of relief, sensed his compassion. We had complete faith that we had found the best available care for our baby.

By Christmas 2013 we committed to relocating and taking Cruz to Adelaide for a month in February 2014. The collaborative approach by all of the specialists and care-givers of the ACFU assured us that they had Cruz’s best interests at heart. Cruz successfully underwent a Cranial Vault Remodel on 4th March 2014. Immediately afterwards we noticed him begin to easily achieve milestones that he had previously struggled with. His brain now has room to expand and to process these motor skills developments.

We have been so blessed and thankful for the outpourings of love and support that have been shown to us by our family, friends and by kind people who didn't personally know us but became aware of Cruz’s journey with craniosynostosis. His journey continues and along the way we meet wonderful people who have shared similar experiences.

We want to keep spreading awareness of craniosynostosis to promote early diagnosis, and to also promote awareness of the excellent support offered in by Craniofacial Australia.