How will having a craniofacial condition affect my child?
A frequently asked question is how will the condition affect my child’s development? Will it affect their speech? And what about their learning and education?
Parents are usually keen to have early answers to these kind of questions. The difficulty is that whilst some craniofacial conditions are not linked to development delay or impairment, others are. All children are different and it is impossible to know exactly how your child will develop until later. Some children may not meet their 'milestones' at the same time as non-affected children, but may well catch up in time. Others may have longer term development issues. The lack of answers can be difficult to accept.
Talking to other parents can help – Headlines has a private Facebook group that you can access if you are a member. However, you need to bear in mind that everyone’s experience will be different, and there may be no straightforward answers.
Some children affected by craniosynostosis may have an altered physical appearance to the shape of their head, face, hands or feet, depending on their specific condition. This may be noticed by other people, both adults and children, and can be difficult to cope with.
Changing Faces is a UK charity that supports and represents people who have conditions affecting the appearance of the face or body. They provide guidance on how to handle staring and difficult or unwelcome comments. They have an excellent website which provides practical help to parents and all age groups of people.