Having a child with a suspected or diagnosed craniofacial condition is a lot for any new parent to come terms with. Craniofacial conditions are rare and vary greatly in their severity so internet searches can result in finding alarming articles giving worst case scenarios, incomprehensible medical terminology or information that is not relevant to your child. Each child is unique and every family will have their own story to tell, but, whatever your situation, Headlines is dedicated to providing support and information from the early stages of diagnosis through treatment and beyond. We aim to work in partnership with the health care professionals providing your child's treatment plan, so that those affected can enjoy happy, successful and rewarding lives.
Craniosynostosis can be syndromic or non-syndromic. Each condition is different and within each condition every child is affected to differing degrees. With some non-syndromic conditions, the treatment may involve one episode of surgery to regularise the shape of the head. Other more complex syndromic conditions may require regular treatment and multiple surgeries over a period of years, sometimes into early adulthood.
Every family's experience of diagnosis is different; often these conditions are not diagnosed until after the child has been born and for some children it can take a while for a definite diagnosis to be made. For some parents the diagnosis may come as a terrible shock, whereas for others there may be a period of meeting different doctors and it can be a relief to be referred to a specialist team who recognise and understand how to treat their child's difficulties. Either way, it is an emotional time for all and a lot to take in, with parents reacting in many different ways. The task of explaining to others about the condition can also be difficult.
A frequently asked question is how do the conditions impact on developmental delay or impairment? Parents are usually keen to have early answers to these 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 they may well catch up in time. Others may have longer term development issues. The lack of answers can be difficult to accept.
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 and its severity. 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 disfigurements of the face or body from any cause. They provide guidance and strategies 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 affected.
Below are three documents prepared by Changing Faces specifically targeted at parents of babies and toddlers which we hope you find useful.
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