Too close for comfort: Difficult to diagnose craniosynostosis case leads to unique discovery

When Luke and Emily Hawkins first learned that their daughter Norah may have been born with a birth defect called craniosynostosis—meaning the sutures of her skull may have fused too early—they were understandably worried. A child’s skull typically takes years to fully fuse, allowing the brain room to grow and develop during her formative years. But if the skull fuses too soon, as Norah’s doctor suspected might have been the case with her, it can create excess pressure on the brain that can lead to developmental delays, learning disabilities and possible cosmetic issues. It was a lot for the first-time parents to process, especially since Norah showed so few signs of trouble. “At two months old, she was hitting all the typical milestones, but there were a few aspects of her head growth that were concerning to her doctor,” Emily remembers. “We had x-rays taken, but unfortunately, those were unable to clearly show whether or not she had the condition. It was a very uncertain and frightening time.” Emily immediately went to the Internet to learn more about craniosynostosis and its diagnosis. Her search eventually led her to Craniosynostosis And Positional Plagiocephaly Support (CAPPS), an organization that supports families whose children have craniosynostosis and connects them with doctors who specialize in its treatment. Just a day later, Emily and a CAPPS member were trading emails. Soon those emails included pictures of Norah’s...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts Source Type: news