Our journey with Craniosynostosis began when James was just two weeks old.
We noticed what looked like a lump on the right side of his forehead, flattening on the left side of his head, and one eye that seemed to open wider than the other. As first-time parents, we trusted our instincts and mentioned these concerns to several healthcare professionals, including doctors, nurses and physiotherapists. At the time, we were reassured that his head would round out as he grew and that there was nothing to worry about.
But as the weeks passed, nothing changed. Just before James turned four months old, his eye began drifting outwards. His head shape still hadn’t improved, and my mum instinct was screaming that something wasn’t right. I was terrified of being dismissed again, but I knew I had to keep advocating for him. I took James to the Emergency Department and asked for further investigation.
That visit changed our lives. A CT scan showed that James had unicoronal craniosynostosis. Unexpectedly, the scan also revealed a small cavernoma in his brain. As a first-time mum already prone to anxiety, it felt like my worst nightmare had come true. In a matter of hours, our world had been turned upside down.
The specialist craniofacial team caring for James were compassionate, knowledgeable and honest, and recommended distraction as the best surgical option for him. Surgery was booked for the following month.
The thought of seeing our tiny baby with a metal distractor protruding from his head was unimaginable. Then, just as we were mentally preparing ourselves, his surgery was postponed by another three weeks. The waiting was really hard. As parents, all we wanted was to protect him and make everything better.
Just before turning six months old, James had his first surgery. The day of surgery was one of the hardest days of our lives. Handing your baby over to the surgical team, knowing they were about to perform major craniofacial surgery, is something no parent can truly prepare for.
James’ surgery was successful, but the first 24 hours afterwards were heartbreaking. He was extremely distressed and watching him was devastating. It became apparent that he was having an adverse reaction to morphine, which was causing significant agitation. Once this was recognised and managed, he slowly began to recover.
As hard as those days were for us, James never stopped fighting. Every cuddle, every bottle, every little smile that slowly returned reminded us just how incredibly brave he was. He had no idea how many people were cheering him on. He simply kept putting one tiny step in front of the other.
Living four hours away from James’ specialist team brought its own challenges. We stayed nearby for two weeks after surgery for regular follow-up appointments before finally returning home, only to make the four-hour trip back every week for ongoing reviews.
The distractor itself became part of our everyday lives. We lived with the constant fear of it being damaged because if it broke, it couldn’t simply be repaired. It would have meant another surgery. We became incredibly protective of James. The distractor caught on everything: the car seat, the pram, our clothes. He couldn’t even lie comfortably on his back because it protruded so far from his head.
Yet somehow, James adapted better than we did. He learned to sleep, play, laugh and explore the world with a piece of metal sticking out of the back of his head. He never complained. He simply carried on being the happy, curious little boy he had always been.
A month later, the handle was removed, making daily life much easier. Then, two months after his initial surgery, James underwent a second operation to remove all of the hardware. We were so excited for the day he would finally be free of the metal, but the thought of handing him back to the surgical team brought back every emotion we had felt the first time.
Once again, James amazed us. He faced another surgery with the same quiet courage that had carried him through the first. Recovery wasn’t always easy, but every day he grew a little stronger. Every little milestone felt like a victory. Every smile reminded us that our little boy was stronger than we could ever have imagined.
Today, James continues to do well. His follow-up appointments have all been positive, and every milestone he reaches feels even more special because we know what he has overcome to get here.
Our journey has also led to something we never expected. We met with our local health service to share our experience of the time it took for James to receive his diagnosis, including the concerns we had raised along the way. Our hope is that by sharing our experience, greater awareness of craniosynostosis can help other families feel heard and children receive a diagnosis as early as possible.
If there’s one thing this journey has taught us, it’s to trust your instincts. You know your child better than anyone else. If something doesn’t feel right, keep asking questions. Keep advocating. Your voice matters.
Throughout this entire journey, James has shown us what it truly means to be brave. Bravery isn’t always loud. Sometimes it looks like a tiny baby facing two major surgeries before his first birthday. Sometimes it looks like learning to smile again after pain. Sometimes it looks like laughing while wearing a metal distractor in your head, cuddling your parents after another long drive to an appointment, or continuing to light up every room despite everything you’ve endured.
James has faced more in his first year of life than many people face in a lifetime. Yet through every appointment, every scan, every operation and every setback, he has remained our happiest little boy. He has shown us that courage comes in the smallest packages, and that even the tiniest people can teach the biggest lessons.
We couldn’t be prouder of our brave little boy. He is, and always will be, our greatest inspiration.
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.
