For parents

Having a child with a suspected or diagnosed craniofacial condition is a lot for any parent to come terms with.   

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Craniofacial conditions are rare and vary greatly in their severity,  so internet searches can often result in finding alarming articles giving worst case scenarios, incomprehensible medical terminology or information that is not relevant to your child.    

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.

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Whatever your situation, Headlines is dedicated to providing support and information from the early stages of diagnosis through treatment and beyond. 

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As well as providing information on how and where to seek specialist advice and help, we can put you in touch with other parents for support.   We also have a members-only Facebook forum  where you can ask questions  of other parents.

 

For details, please email info@headlines.org.uk

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Working with specialist researchers from the Centre for Appearance Research at the University of the West of England, Bristol, we have also produced two booklets and video to help parents with some of the common concerns and issues they may encounter when their baby is first diagnosed and when they undergo surgery. 

 

You can download a copy of the booklet 'My baby has craniosynostosis'  here  and a copy of 'Surgery for cranioysnostosis: a parent's guide' here

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You can watch the video here.

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