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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.
