One-year-old becomes first child in world to receive pioneering treatment for rare skull condition

A one-year-old boy from Derbyshire has become the first child in the world to receive a pioneering new treatment designed to reshape the skull of babies born with a rare condition.

Rory Potter was diagnosed shortly after birth with severe sagittal craniosynostosis, a condition in which part of the skull fuses too early. Instead of being able to grow normally as the brain develops, the skull becomes unusually long from front to back and narrow from side to side.

The condition affects around one in every 1,800 to 2,000 babies in the UK and can require surgery during the first months of a child’s life. Without treatment, craniosynostosis can lead to complications including learning difficulties and problems with sight, hearing, breathing and dental development.

For around two decades, one approach to treating children with the condition has involved placing stainless steel springs into the skull. The springs gradually widen the space between the bones, allowing room for the brain to develop and new bone to grow.

Now, specialists at Great Ormond Street Hospital (GOSH) and University College London (UCL) have developed a new generation of springs made from nitinol, an alloy of nickel and titanium.

The “super-elastic” springs can be individually designed for each child and are intended to adapt more naturally as the skull grows and changes.

Before surgery, the team uses CT scans to produce a detailed digital model of the child’s skull. This allows specialists to predict how it is likely to respond and create bespoke springs capable of applying the appropriate amount of force.

Once fitted, the springs gradually reshape the skull over a period of several weeks or months before being removed.

Doctors believe the technology could allow some children to avoid longer and more invasive procedures while also reducing the need for blood transfusions.

Rory was born in April 2025. His parents, Harry and Jo Potter, from Chesterfield, noticed that their son’s head appeared longer than expected and raised their concerns.

After sagittal craniosynostosis was suspected, Rory was referred to Great Ormond Street Hospital, where the diagnosis was confirmed.

Because his condition was severe, doctors believed he could benefit from the newly developed nitinol springs rather than the traditional stainless steel alternative.

Rory underwent the 45-minute procedure to fit the springs in September last year. He needed to spend just one night in hospital before returning home to Derbyshire with his family.

Nine weeks later, the springs were removed after his skull had reached the intended shape.

His mother Jo said Rory is now happy, energetic and reaching his developmental milestones, adding that people would not know what he had been through from seeing him today.

She praised the care and reassurance the family received throughout the process and the work of the medical and research teams involved in developing the treatment.

Professor Owase Jeelani, a consultant neurosurgeon at Great Ormond Street Hospital who helped develop the technology and led Rory’s surgery, explained that while conventional stainless steel springs are strong, they do not always give surgeons the ability to precisely adjust the force being applied to the skull.

The nitinol alternative provides greater flexibility and could, in some cases, help children avoid further surgery.

For the team behind the treatment, Rory’s successful procedure is also the culmination of years of collaboration between medicine and engineering.

Professor Silvia Schievano led the team of biomedical engineers at UCL involved in developing the technology and said thousands of hours of research had gone into reaching the point where it could be used to treat a child.

The research behind the procedure was supported by Great Ormond Street Hospital Charity and the National Institute for Health and Care Research GOSH Biomedical Research Centre.

Great Ormond Street Hospital Charity provided more than £1 million through its Face Value project, which is working to improve treatments for children living with complex forms of craniosynostosis.

Rory’s treatment represents the first real-world use of the new springs, and specialists will continue to learn from their use as the technology develops.

For his family, however, the impact is already much more immediate.

After an operation lasting less than an hour, one night in hospital and nine weeks with the springs in place, Rory is now back home growing up alongside his older brother Oscar.

A complex combination of digital modelling, biomedical engineering and paediatric surgery has given doctors a new way of treating a rare condition. For the first child to benefit from it, the result is considerably simpler: the opportunity to get on with being a little boy.

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