Full Breakdown
Leeds Family’s Experience Highlights Delayed Diagnosis of Sagittal Craniosynostosis
By Drooid · · How we work
Delayed Diagnosis and Surgical Journey
Bethany Hardy from Leeds noticed that her newborn daughter, Nancy, struggled with head-lifting and tummy time. By nine months the infant’s head measured in the 98th percentile while her body was around the 24th percentile, prompting the family to seek further assessment. After an initial X-ray referral, the Hardys booked a private consultation at Great Ormond Street Hospital in London, where specialists identified sagittal craniosynostosis—a rare condition in which portions of the skull fuse prematurely. The diagnosis was not confirmed until Nancy was one year old. Consequently, she required six operations, including blood transfusions and a skin graft, and spent a month in hospital. Bethany believes an earlier diagnosis could have avoided the more invasive treatment.
Understanding Sagittal Craniosynostosis
Sagittal craniosynostosis is a congenital disorder that prevents normal skull growth, leading to an elongated head shape and potential pressure on the brain. Early detection typically allows for less extensive surgical correction, often performed before the infant’s first birthday.
Key Individuals and Institutions
- Bethany Hardy – Mother who observed the early warning signs and pursued specialist care.
- Nancy Hardy – Child diagnosed with sagittal craniosynostosis.
- Great Ormond Street Hospital – London pediatric centre where the condition was identified through visual assessment.
- National Health Service (NHS) – Provided reconstructive surgery after the diagnosis.
Statistics from the Case
Verbatim Quotes
- “She really struggled lifting her head, tummy time, that kind of stuff, because her head was a lot larger than her body.” — Bethany — Bethany Hardy, mother.