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Shortly after the birth of her daughter, Bethany Hardy began to notice that something seemed off with her baby. Nancy’s head appeared unusually shaped and significantly larger compared to the rest of her body, making it difficult for her to lift her head. Concern grew steadily, and by the time Nancy reached nine months old, her parents from Leeds were deeply worried about her development.
When Nancy turned one, she was finally diagnosed with sagittal craniosynostosis, a rare condition that occurs when the skull bones fuse prematurely, hindering proper skull growth. Unfortunately, the late diagnosis resulted in the need for more extensive and invasive surgical procedures. Nancy underwent six operations, which included blood transfusions and a skin graft, and required a month-long hospital stay. Bethany reflects that an earlier diagnosis might have spared her daughter some of the more severe treatments.
Bethany recalls the early days after Nancy’s birth, highlighting the struggles her daughter faced: “She really struggled lifting her head, tummy time, that kind of stuff, because her head was a lot larger than her body.” She noted the disproportion between Nancy’s head and body sizes, mentioning, “By nine months her head was on the 98th percentile but her body was on the 24th, which straight away kind of rings alarm bells because they should all be in line.”
Initially, Nancy was scheduled to have an X-ray, but her parents opted to arrange a private consultation at Great Ormond Street Hospital in London instead. There, specialists were able to diagnose her condition simply through visual examination. Following this, Nancy was provided with reconstructive surgery via the NHS, aiming to correct the abnormal skull growth
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