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Leeds parents raise awareness of rare skull condition after daughter's surgery

Parents from Leeds are raising awareness of sagittal craniosynostosis, a rare condition where the skull does not grow properly, after their daughter underwent multiple surgeries.

  • Nancy, now two, was diagnosed with sagittal craniosynostosis at one year old.
  • The condition meant Nancy's skull did not grow properly, leading to a large and unusually shaped head.
  • Her parents believe an earlier diagnosis could have resulted in less invasive treatment.

Parents from Leeds are raising awareness of sagittal craniosynostosis, a rare condition affecting skull growth, following their daughter Nancy's extensive surgery.

Nancy, now two, was diagnosed with the condition at one year old. Her mother, Bethany Hardy, noticed Nancy's head was a strange shape and much larger than her body, making it difficult for her to lift.

By nine months, Nancy's head was on the 98th percentile while her body was on the 24th. Specialists at Great Ormond Street Hospital identified the condition, which is caused by parts of the skull fusing before birth, through visual observation.

Nancy underwent six operations, including blood transfusions and a skin graft, and spent a month in hospital. Her parents believe an earlier diagnosis, before six months, could have led to a less traumatic, shorter surgical procedure.

The family is now promoting the importance of early diagnosis and intervention for craniosynostosis.

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