It’s never easy when people stare or say something about your child. Even if comments are not meant to be hurtful, they can still leave you or your child feeling upset. The encouraging part is that many people respond with compassion and kindness once they understand more.
Responding to stares and negative comments about your child Read More »
Supporting families impacted by a
craniofacial condition—especially during diagnosis and treatment—can make a meaningful difference. Here are some ways that friends and extended family can offer support.
How to support families impacted by a craniofacial condition Read More »
Caring for a child with a craniofacial condition can bring both emotional and practical challenges. During this time, maintaining a strong, supportive partnership is essential—not only for your child’s wellbeing, but for your own.
Supporting each other: A guide for parents of a child with a craniofacial condition Read More »
Talking about your child’s craniofacial condition can be an act of love, advocacy, and education—but you get to decide how and when those conversations happen.
How to talk about Your child’s craniofacial condition with others Read More »
When a child is diagnosed with a craniofacial condition, siblings often feel confused, worried, jealous, or left out. With thoughtful support, siblings can adapt well—and even grow stronger in empathy, resilience, and connection.
Supporting siblings of a child with a craniofacial condition Read More »
Hospital and specialist appointments are a big part of the craniofacial journey. These visits can sometimes be long, delayed, or overwhelming, especially if you have a baby or young child with you. A little preparation can make the experience easier and help you feel more in control.
Practical tips for medical appointments Read More »
Bullying can happen at any age, in person or online. For children and teenagers with craniofacial conditions, experiences may vary depending on how visible their difference is, what peers know about their surgery or condition, and the social environment at school.
Supporting your Child with Bullying: A Guide for Parents Read More »
Preparing for appointments with your
child’s craniofacial team can feel overwhelming, and it is natural to have many questions. This fact sheet provides a list of questions that other parents have found helpful to ask. They cover a wide range of topics, from diagnosis and surgery, through to recovery, long-term care, and family considerations.
Questions that parents may wish to ask clinicians during appointments Read More »
It’s natural to feel overwhelmed, but approaching the conversation with empathy and clarity can help your child feel more secure and understand their condition better. The following are some additional tips to consider.
Tips for talking with your child about their craniofacial condition Read More »
Most children diagnosed with craniosynostosis undergo surgery in infancy, or while they are a toddler. Knowing when and how to tell your child about their diagnosis will depend on each child and family. Every child is different.
How and when to talk to your child about Craniosynostosis Read More »
