Brazilian twins who were conjoined at the tip have been successfully separated with the help of a British neurosurgeon.
Bernardo and Arthur Lima, who were born with fused brains, underwent several operations in Rio de Janeiro, under the direction of Great Ormond Street Hospital pediatric surgeon Noor ul Owase Jeelani.
The three-year-olds had seven surgical procedures, involving more than 27 hours of operating time in the last operation alone, and almost 100 medical staff.
It was one of the most complex separation proceedings ever completed, according to the charity which funded it and which Mr Jeelani founded in 2018 – Gemini Untwined.
Surgeons in London and Rio spent months testing techniques using virtual reality projections of the twins based on CT and MRI scans – what Mr Jeelani described as “space age cases”.
He said that for the first time in the world, surgeons in separate countries were using headsets and operating in the same “virtual reality room” together.
Speaking about the VR aspect of the surgery, Jeelani told the PA news agency: “It’s just amazing, it’s really great to see the anatomy and do the surgery before you actually put the kids at risk.
“You can imagine how reassuring that is to the surgeons.
“In some ways, these operations are considered the most difficult of our time, and doing it in virtual reality was just really man-on-Mars stuff.”
He said previous failed attempts to separate the boys meant their anatomy was complicated by scar tissue and he was “really worried” about the risky procedure.
Mr Jeelani said he was “absolutely devastated” after the 27-hour operation, during which he took just four 15-minute breaks for food and water, but it was “amazing” to see the family feeling “over the moon” afterwards.
“There were a lot of tears and hugs,” he said. “It was wonderful to be able to help them on this journey.”
The idea behind the charity was to create a global health service for super rare cases to try to improve outcomes for these children
Pediatric Surgeon Noor ul Owase Jeelani
He added that, as with all conjoined twins after separation, the boys’ blood pressure and heart rate were “through the roof” – until they were reunited four days later and touched hands.
Mr Jeelani said they recovered well.
He added that his charity has quickly become a “global repository of knowledge and experience” in separation surgery, and he hopes it will serve as a model for a “global health service” providing expert care in other rare diseases.
“The idea behind the charity was to create a global health service for super rare cases to try and improve outcomes for these children,” he said.
“The model of what we’ve done, I think, can and should be replicated for other super-rare conditions.”
This was Jeelani’s sixth separation procedure with Gemini Untwined, having previously operated on twins from Pakistan, Sudan, Israel and Turkey.
He led the procedure together with Dr Gabriel Mufarrej, head of pediatric surgery at the Instituto Estadual do Cerebro Paulo Niemeyer in Brazil.
Dr Mufarrej said the hospital where he works has been caring for the boys for two-and-a-half years and their separation will be “life-changing”.
He said: “Since the parents of the boys came from their home in the Roraima region to Rio to seek our help two and a half years ago, they had become part of our family here at the hospital.
“We are delighted that the operation went so well and that the boys and their families have had such a life-changing outcome.”
Since Bernardo and Arthur are almost four years old, they are also the oldest craniopagus twins with a fused brain that has been separated.
According to Gemini figures, one in 60,000 births result in twins, and only 5% of these are conjoined at the head – known as craniopagus babies.
It is estimated that 50 such twins are born around the world each year.
Of those, it is believed that only 15 survive beyond the first 30 days of life.
With today’s technologies, which the charity aims to make more available, around half of these cases will be candidates for successful surgical separation.