Sheffield teenager with rare blood disorder saved by groundbreaking operation

A teenager with an extremely rare blood disorder has said "I wouldn't be here today" if not for the team that carried out a ground-breaking operation to remove a brain tumour.

Ahmed Khan, aged 17, was told he would not have survived if the tumour had not been removed.

placeholder image — Ahmed Khan | Contributed

In May 2023, Ahmed came home from school complaining of double vision and this led to diagnosis of a pineal brain tumour.

Mrs Bilal 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."

This tumour was on top of Ahmed’s diagnosis with Bernard-Soulier syndrome as a new-born baby.

This syndrome results in dangerously low levels of platelets - the blood components that stop any bleeding after an injury.

His mother Maryam Bilal, who is a nurse, 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."

Specialists at Sheffield Children's Hospital faced a huge challenge due to the chances of catastrophic blood loss caused by Bernard-Soulier syndrome.

After a 13-hour operation involving a range of specialists and blood product donations from more than 100 people, Ahmed, from Sheffield, is enjoying doing T-levels in mechanical engineering in his first year at college.

His doctors say his walking is much better and he has even starting running.

Ahmed said on Wednesday: "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."

Ahmed (L) and brother Muaz (R). | Contributed

Sheffield Children's NHS Foundation Trust said the operation was a success due to the multidisciplinary collaboration between specialists at the hospital alongside colleagues from NHS Blood and Transplant (NHSBT).

Consultant neurosurgeon 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."

Mr Bagga added: "Ahmed is brilliant now, he's running again.

"We knew instantly that it was successful - it was a really good feeling."

Consultant haematologist Jeanette Payne, who co-ordinated the complex blood management plan, 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.

"I am so pleased that he has done so well."

Ahmed underwent plasma exchange treatment with NHSBT's regional Therapeutic Apheresis Services team in the week before the procedure to reduce the antibodies affecting transfusions.

He also received carefully selected clotting factors and specially matched platelets during the operation.

NHSBT said it provided 113 units personally matched for Ahmed, including 10 units for the operation and 24 for the recovery, and more than 100 donors helped keep him alive.

Kirti Mepani, clinical scientist section head at NHS Blood and Transplant Colindale, said: “Ahmed is from a minority ethnic background, which can make it more difficult to find closely matched donors because some groups are under-represented in the donor base.

"This was a very high-risk operation that required close co-ordination between the clinical team, the hospital blood bank and NHS Blood and Transplant to ensure the right platelets were available.

"I am incredibly proud that our team was able to supply the carefully matched platelets needed to make the surgery possible."