Mother Describes Repeated Dismissals Before Daughter's Craniosynostosis Diagnosis

A mother, Jodie Crawford, stated that from birth her daughter Hetty showed persistent sleep difficulties and would not settle. At one month, a physician suggested possible dairy intolerance, prompting Crawford to remove dairy from her own diet. By two months, Crawford observed an enlarged forehead and indentations on the infant's head.

She returned to the doctor, who said variations in head shape were common and not a cause for concern. Crawford continued to note a lump forming at the back of the head. She was again told the lump was normal and that sleep problems often occur in infants.

At three months, Crawford researched medical conditions and identified craniosynostosis, in which skull bones fuse prematurely. She presented the term to her physician, who said he had not heard of it and advised against internet searches. Crawford persisted and obtained an appointment with a different doctor, who agreed to an urgent referral.

The following day at the hospital, the examining physician immediately suspected craniosynostosis and contacted a specialist.

Hetty received a diagnosis of both metopic and sagittal craniosynostosis. At one year of age she underwent a ten-hour surgical procedure at Alder Hey Children's Hospital Trust. Because of pandemic restrictions, only Crawford was permitted to accompany the child into the operating room.

After the procedure, Hetty developed a serious infection requiring emergency treatment. Crawford stated that six years later the child shows no lasting effects from the condition. She advised parents to continue seeking medical attention when they believe something is wrong with their child.