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For families navigating cleft and
craniofacial conditions.
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Simple step by step resources to help families feel prepared and informed.
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Packing for hospital: A checklist for parents
Craniofacial surgery can be a stressful experience for both children and parents. Being prepared can make the hospital stay more comfortable for everyone.
Supporting your child at day care or school: Suggestions for information parents could share
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.
Capturing memories of your child’s craniofacial journey
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.
Craniosynostosis: What to expect after surgery
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.
How each medical appointment supports your child’s care
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.
Understanding the long-term journey with a craniofacial condition
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.
What to expect on the day of your child’s surgery
Being the parent of a child undergoing surgery can feel overwhelming, despite your best efforts to prepare. Knowing what to expect on the day can help you feel more confident and better able to support your child.
Tracking your child’s clinical progress
Keeping track of your child’s medical and recovery information can make day-to-day care easier and provide a clear picture of progress over time. Recording details like symptoms, pain levels, sleep, and emotions can help you notice patterns, share accurate updates with your healthcare team, and feel more confident in your child’s care.
Advocating for your child’s care
Parents are their child’s strongest advocates and know them best. At times, you may need to speak up during diagnosis, before surgery, or in the recovery period to ensure your child’s needs are met.
Australian craniofacial support organisations
A list of Australia-based organisations and groups that can help provide families and patients with support specific to craniofacial conditions, as well as more general support and assistance.
Referral process to access a craniofacial specialist
Access to craniofacial services may differ across states. There may also be differences depending on whether you wish to access services through the public or private health care system.
Contact details for craniofacial & cleft clinics located in hospitals around Australia
Please contact hospitals directly to access the most current and specific information regarding their specific Craniofacial Clinic service. Referrals to craniofacial and cleft clinics are typically made through your child’s primary care physician (GP) or a specialist, such as a paediatrician or a dentist.
Responding to stares and negative comments about your child
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.
How to support families impacted by a craniofacial condition
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.
Supporting each other: A guide for parents of a child with a craniofacial condition
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.
How to talk about Your child’s craniofacial condition with others
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.
Supporting siblings of a child with a craniofacial condition
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.
Practical tips for medical appointments
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.
Supporting your Child with Bullying: A Guide for Parents
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.
Questions that parents may wish to ask clinicians during appointments
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.
Tips for talking with your child about their craniofacial condition
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.
How and when to talk to your child about Craniosynostosis
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.
Activities Parents Could Consider Doing on the Day of Surgery
Waiting at the hospital on the day of your child’s craniofacial surgery can be nerve-wracking. Here are some constructive activities that parents may consider while waiting in the hospital for their child’s surgery.
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Understanding Conditions
Learn about craniofacial conditions, diagnoses, treatment and care pathways.
Family Support
Guides
Practical support for surgery, anxiety, hospital stays, feeding, school and wellbeing.
Preparing
for Surgery
Simple step by step resources to help families feel prepared and informed.
Read Stories &
Experiences
Hear from families and individuals who have walked this journey.
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