When Coen was born, we knew something wasn’t quite right. Shortly after his birth, it was noticed that his head was an unusual shape. Because he had been breech until around 36/37 weeks of pregnancy, we were initially reassured that it may simply have been due to his position in the womb and that it would likely improve over time. We held onto that hope, but as the weeks passed and there was no change, we knew there had to be another explanation.
Those first few weeks of Coen’s life were incredibly overwhelming. Alongside concerns about his head shape, he experienced ongoing breathing difficulties that resulted in multiple frightening trips to ED before he was even six weeks old. At several of those visits, doctors also expressed concern about the shape of his head, and suddenly we found ourselves navigating referrals, specialist appointments, and endless uncertainty while trying to care for our beautiful baby boy and our toddler.
After a CT scan, our fears were confirmed when Coen was diagnosed with sagittal craniosynostosis. Hearing those words was something we never expected, and we were suddenly thrown into a world we knew nothing about. The months that followed were filled with waiting, questions, and emotions we never imagined we’d experience as new parents. It was heartbreaking knowing our little boy would need major cranial surgery before his first birthday.
In April 2026, at just eight months old, Coen underwent cranial vault remodelling surgery. Handing him over to the surgical team was without question the hardest thing we’ve ever had to do. Watching your baby disappear through theatre doors is a moment that stays with you forever. While we knew the surgery was necessary and that he was in the very best hands, nothing can prepare you for that feeling.
Thankfully, Coen’s surgery was a success, and his recovery exceeded every expectation. Seeing his strength, resilience, and beautiful smile return so quickly reminded us just how incredible children are. We will never forget the kindness, compassion, and expertise of everyone who cared for him and our family throughout this journey.
Although we look back on those months with sadness, we also look forward with immense gratitude and hope. Coen’s journey has changed us forever. It has shown us the importance of early diagnosis, the value of specialist care, and the comfort that comes from knowing you’re not alone. By sharing his story, we hope to raise awareness of sagittal craniosynostosis and offer comfort to other families who may be at the very beginning of a journey that feels so frightening.
There is hope, and there is light on the other side. – Coen’s Mum Hannah
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.
