A teenager with an extremely rare blood disorder has undergone a serious brain tumour surgery at Sheffield Children’s Hospital.
The surgery took 13 hours and required specialist planning to manage the risk of bleeding caused by Bernard-Soulier syndrome which is a rare inherited disorder.
In May 2023, Ahmed Khan came home from school complaining of double vision. After being examined in hospital, doctors diagnosed a Pineal brain tumour.
Maryam Bilal, Ahmed’s mother, said: ”You never think you are going to be told that your teenage son has cancer. You always think it happens to other people, not you. The whole world just came crashing down around us.”
Despite chemotherapy, the tumour in the brain continued to grow, resulting in surgery being required.
Surgery was considered high risk due to Ahmed’s blood disorder and because he had developed antibodies from the platelet transfusions, meaning standard transfusions would no longer work effectively
Consultant Neurosurgeon Mr Veejay Bagga, who led the surgery, said: “If we did nothing, the tumour would have been fatal. Surgery carried enormous risks because of Ahmed’s blood condition, but it was the only option that could give him a chance.
“It required incredibly careful planning between multiple specialist teams to make sure we could manage the bleeding risk safely.”
Dr Jeanette Payne, Consultant Haematologist at Sheffield Children’s, said: “I have looked after Ahmed since diagnosing his condition when he was a baby. When he developed a brain tumour as a teenager it was incredibly worrying because treating cancer in someone with a severe bleeding disorder is extremely challenging.”
Ahmed was diagnosed with Bernard-Soulier syndrome shortly after birth, when blood tests revealed dangerously low platelet levels.
Bilal said: “We had never heard of it before. We were told the chances of having it were more than a million to one.
“We have always had to be careful. From the start we were told that surgery could carry a risk of death because his blood might not clot properly.”
The surgery was successful after an efficient and effective multidisciplinary collaboration between specialists at Sheffield Children’s and the NHS blood transplant.
Ahmed said: “I wouldn’t be here today without the skill and dedication of the surgeons and the team at Sheffield Children’s. They gave me a chance to continue my life and look forward to the future.”