A baby boy from Derbyshire has become the first patient in the world to receive a new treatment for a rare skull condition, and a year on, his family says he is doing well.
Rory Potter, from Chesterfield, was diagnosed shortly after he was born in April last year with severe sagittal craniosynostosis, a condition where the skull fuses before birth. He had surgery in September at Great Ormond Street Hospital to have “super elastic” springs inserted to gradually reshape his skull before they were removed.
His mother, Jo Potter, said: “You wouldn’t know what he’s been through.”
The 36-year-old described Rory as “happy, cheeky and full of energy”.
“He’s just like every little boy and hitting milestones and he will have a great story to tell when he’s older,” she said.
She said she and her husband Harry “cannot thank the team enough for the care, compassion and reassurance”.
“Not to mention their dedication to medical science to support and help children thrive.
“Throughout the process, every element was explained so well. We knew what was going to happen and how, we received amazing support from each member of the team.”
Treatment for the condition usually involves skull reshaping surgery in the first months of life. For the past two decades, that has involved stainless steel springs to gradually widen the gap, giving the brain space to develop and new bone space to grow.
Experts have now developed new “super elastic” springs using nitinol, a nickel and titanium alloy. Rory was the first patient to have them fitted.
Great Ormond Street Hospital said 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.
The springs were developed by experts at Great Ormond Street Hospital and University College London. Once inserted, they stay in place for several weeks to months before being removed.
Experts said the new technology means children can avoid longer and more invasive operations, and it should reduce blood transfusion rates.
After Rory was referred to Great Ormond Street Hospital, doctors thought he might benefit from the nitinol springs instead of traditional steel springs because his case was severe.
Professor Owase Jeelani, consultant neurosurgeon at Great Ormond Street Hospital, who was part of the team that developed the new springs and led the surgery, said: “Traditional stainless-steel springs are very robust, but they don’t always allow us to finetune the force on the skull.
“These new nitinol springs give us much greater flexibility and, in some cases, can prevent the need for further surgery.
“This first surgery is important progress for children with craniosynostosis and, so far, we have seen fantastic outcomes.”
Professor Silvia Schievano, who led the team of biomedical engineers at University College London, said: “This has been many years in the making, with thousands of hours of necessary research undertaken.
“It is a very proud moment to see this technology used in a child with such a positive result. It uplifts the importance of engineering research and clinical care coming together to develop new technologies for improved healthcare.”
The research behind the operation was funded by Great Ormond Street Hospital Charity and the National Institute for Health and Care Research Great Ormond Street Hospital Biomedical Research Centre.
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