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.
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.
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.
When Billy was born, the midwife made a comment about Billy having quite a large head. At the time we thought nothing of it. Following his birth we had all the checks – the paediatrician, GP appointment, midwife check and everyone said the same thing ‘just keep an eye on his head shape’, as it was quite long.
Our son, Harvey, was diagnosed with sagittal craniosynostosis and underwent cranial vault remodelling surgery at just 13 months of age. Throughout his journey, he has shown remarkable resilience and an unwavering enthusiasm for life.
When we found out we were expecting our daughter, Sylvie, we knew there was a 50% chance she could inherit Muenke syndrome. While we hoped our daughter wouldn’t have to face the same challenges, we knew it was a possibility. At our 20-week morphology scan, our concerns became more real.
Our darling little Juniper (youngest of 3 girls) was born with Sagittal craniosynostosis early last year. As soon as she was born, I immediately thought “her head looks unusual” (but still beautiful!). We were told that as she was born via c-section, maybe her head needed some time to “round out”.
When Adelaide (Addie) was born, her parents Gabrielle and Dan were suddenly faced with questions no family is prepared for. Would she need major surgery on her skull? What happens next?
One of the things that we do at Craniofacial Australia is support people from overseas with craniofacial conditions. Zuhair, a dedicated father of 3, searched tirelessly to find the best support and treatment for his first-born daughter Zuhrah. We spoke to Zuhair about how our Patient Support program has played a vital part in accessing the best possible care and treatment for his precious daughter.
Meet Vallerie – Born with a bilateral cleft lip, she received her diagnosis during pregnancy and began treatment at just 14 weeks old. Over the years, Vallerie has undergone 7 surgeries, including a hip-to-face bone graft, Lefort 1 Maxilla Advancement, and septorhinoplasty – as well as over a decade of orthodontic care.
