Changing Faces, Changing Lives Contents Otherwise known as? Pierre Robin sequence is also known by the following names: Pierre Robin syndrome Robin sequence Pierre Robin anomaly Pierre Robin malformation Signs & Symptoms Pierre Robin sequence is a condition that involves a combination of craniofacial differences. The primary features include micrognathia (a small jaw), cleft palate, […]
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Changing Faces, Changing Lives Contents Otherwise known as? Pfeiffer syndrome is also known by the following names: Craniofacial Dysostosis Type II Craniofacial Syndrome Type II Pfeiffer Syndrome with Syndactyly Craniosynostosis with Syndactyly These terms refer to the same genetic condition characterized by premature fusion of skull bones (craniosynostosis), leading to a different head shape and
Changing Faces, Changing Lives Contents What is Crouzon Syndrome? Crouzon syndrome: is a genetic condition characterized by craniosynostosis (premature fusion of skull bones), which affects the shape of the head and face. Otherwise known as? Craniofacial dysostosis Signs & Symptoms The severity of symptoms varies among individuals. 1. Craniofacial differences Craniosynostosis: Premature skull fusion leading
Changing Faces, Changing Lives Contents Otherwise known as? Apert syndrome is also known by several other names, although “Apert syndrome” is the most widely recognized. Some alternative terms or descriptions include: Craniofacial dysostosis – This refers to differences in growth of the skull bones, which is a key feature of Apert syndrome. Apert’s syndrome –
Craniofacial surgery can be a stressful experience for both children and parents. Being prepared can make the hospital stay more comfortable for everyone.
Packing for hospital: A checklist for parents Read More »
Starting daycare or school is an exciting step for both children and families. For children with a craniofacial condition, sharing some key information with educators and carers can help them feel confident in supporting your child.
Documenting your child’s craniofacial journey can be deeply meaningful — not only to track progress and milestones, but also to create a space for reflection, sharing, and advocacy.
Capturing memories of your child’s craniofacial journey Read More »
Craniosynostosis is a condition where one or more of the bones in a child’s skull fuse too early, before the brain has fully developed. Surgery is usually recommended to correct the head shape, relieve pressure on the brain (if present), and support normal growth and development.
Craniosynostosis: What to expect after surgery Read More »
When a child is diagnosed with a craniofacial condition, families are often given a long list of medical appointments. It is completely normal to feel overwhelmed or unsure about the journey ahead.
How each medical appointment supports your child’s care Read More »
Every child’s craniofacial journey is different. The appointments, treatments, and surgeries your child may need will depend on their specific diagnosis and how the condition affects them.
Understanding the long-term journey with a craniofacial condition Read More »
