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Jaspers story

At 32 weeks pregnant we found out something was potentially wrong with the shape of jaspers skull. We had scans every 2 weeks with the fetal medicine unit at St Michaels who confirmed there is a a chance Jasper had a condition called Crainiosynotisis.

At 12 hours old a mri was ordered which confirmed our fears. Following a CT at 2 weeks old, Jasper was then referred to Oxford John Radcliffe hospital who explained to us that Jasper has Saggital crainiosynosis and would need surgery when he’s around 15-18 months old.

Whilst we await surgery we are full of unknowns for Jasper but we know we are in the most capable of hands.

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We are the leading UK charity supporting people with craniosynostosis and other rare craniofacial conditions.

Craniosynostosis is a rare craniofacial condition where two or more plates of the skull prematurely fuse to each other, usually before birth. This results in the baby’s skull not growing properly and the newborn’s head shape being different at birth. The shape of the head may continue to change after birth as it grows.