Mum 'made her son disabled' to save his life

Team Be

A mum revealed she ‘made her son disabled’ to save his life - by allowing surgeons to disconnect half his brain.

Kyan Blake, now eight-years-old, suffered up to 100 exhausting seizures a day after he had a stroke, which doctors think was most likely caused by chicken pox.

Doctors eventually said the only possible cure was a risky operation to disconnect half his brain, leaving him blind in one eye, unable to walk and unable to fully speak.

But despite a chance the op wouldn't even work, his brave parents, Sonya Guest and Robert Blake, from the West Midlands in the UK, gave consent.

A mum revealed she ‘made her son disabled’ to save his life - by allowing surgeons to disconnect half his brain. Photo: MEGA

"I made my son disabled to save his life,” Sonya said.

"It was the hardest decision, but I don't regret it.

"We had two options - to carry on until one day until a seizure took him from us, or to agree to remove half of his brain, making him disabled to try and stop the seizures.

"We agreed after Kyan got so bad that he was always angry; smashing windows and lashing out. We couldn’t carry on.”

Kyan had a stroke aged two, which doctors later said was most likely caused by an earlier bout of chicken pox which had lingered in his system.

Kyan had a stroke aged two, which doctors later said was most likely caused by an earlier bout of chicken pox which had lingered in his system. Photo: MEGA

Initially his mum noticed he was ‘grisly and dribbly’, but when they couldn't get him to talk anymore his worried parents rang NHS 111.

Sonya was on the phone when she saw his face droop on one side and suddenly realised he was having a stroke, so hung up and drove him to A&E.

Doctors initially suspected he might have a mass on the brain but later discovered he had suffered an infarction - obstruction of the blood supply to his brain caused by a stroke.

It took three weeks for doctors to get the hour-long seizures under control with medication, but the brain injury left him unable to eat, walk or talk.

Brave Kyan relearned to walk and talk, and was seizure and medication free for nearly two-and-a-half years when the attacks suddenly returned.

He was suffering up to 100 a day, despite trying 11 different medications, leaving him unable to go anywhere on his own.

"He would drop to the floor really violently, and he couldn't even go to the toilet on his own, let alone have a bath. We we're scared all the time,” Sonya said.

Doctors eventually told the family the only treatment option left was a hemispherectomy, in January 2017

The very rare neurosurgical procedure involves the cerebral hemisphere - one half of the brain - being removed or disconnected. 

His speech is returning and he can hold conversations despite struggling to find some words. It is expected he will eventually be able to take steps on his own, relying on his wheelchair only for longer journeys. Photo: MEGA

"They told me he would be significantly and severely visually impaired, and that he will probably be able to walk again - but it might take one year or ten years," she said.

"Really there was no choice, but that didn't make it an easy decision.”

The family agonised over the decision and he had the 11 -hour operation to disconnect the left half of his brain at Birmingham Childrens' Hospital in January this year.

After the surgery, he wasn't able to talk for two weeks, but broke his silence by eventually calling for his "granddad".

After eight weeks in hospital he was discharged and is currently taking part in a three-month intensive residential rehab programme.

His speech is returning and he can hold conversations despite struggling to find some words.

It is expected he will eventually be able to take steps on his own, relying on his wheelchair only for longer journeys.

"Now the seizures have stopped I can look back and see that he wasn't happy,” Sonya said.

"He wasn't our Kyan for all those years. 

"We've got the old Kyan back now from when he was two, and the rest we can help him with."

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