‘Happy and cheeky’ Rory given world-first treatment for rare skull condition

News | Health ‘Happy and cheeky’ Rory given world-first treatment for rare skull condition One-year-old Rory Potter was diagnosed with severe sagittal craniosynostosis. Rory Potter has become the first patient to receive a new type of treatment for a rare skull condition (Family handout/PA) Ella Pickover2 minutes ago A “happy and cheeky” baby boy has become the first in the world to be given a new type of treatment for a rare skull condition. One-year-old Rory Potter was diagnosed with severe sagittal craniosynostosis – a condition where the skull fuses before birth which leads to the skull to be long from front to back but narrow from side to side – shortly after he was born. Treatment usually involves skull reshaping surgery, which takes place within the first months of life. Over the last two decades this has involved the use of stainless steel springs to gradually widen the gap, giving space for the brain to develop and for new bone to grow. Rory has his surgery in September last year (family handout/PA) But now experts have developed new “super elastic” springs using a special metal called nitinol, a nickel and titanium alloy, with Rory the first patient to have them fitted. Each spring is custom-designed to the patient and their “super elastic properties” allow them to adapt more naturally to a child’s growing skull, experts at Great Ormond Street Hospital (Gosh) said. The springs were developed (UCL). Nitinol springs that are used to gradually widen the gap, giving space for the Rory’s brain to develop and for new bone to grow (Gosh/PA) PA Media Using CT scans, the team create a detailed digital model of each child’s skull to predict how they will respond to surgery. They then design bespoke springs to deliver the right level of force. Once inserted the springs will remain in place for several weeks to months, gradually reshaping the skull before being removed. The new technology means children can avoid longer and more invasive operations and should see a reduction in blood transfusion rates, experts said. Rory was born in April 2025. Rory with his big brother Oscar (family handout/PA) His parents, Harry and Jo Potter, from Chesterfield, Derbyshire, raised concerns about Rory’s head being longer than expected. With sagittal craniosynostosis suspected, Rory was referred to Gosh where his diagnosis was confirmed. Susan Sarandon says she has lost film roles due to support for Palestine Ian McKellen recalls ‘inglorious’ debut performance and marks 65 years of acting Art After Dark is back with an exciting calendar of cultural events Because his case was severe, medics thought he may benefit from the new nitinol springs instead of the traditional steel springs.