Extraordinary People: Living with Half a Brain - Monday October 1

extraordinary people: living with half a brain
21.00–22.00

Five’s acclaimed documentary strand continues with another batch of absorbing programmes exploring remarkable stories of human experience. Tonight’s programme follows the stories of two young sufferers of epilepsy as they undergo radical surgery to remove large sections of their brains.

At the age of just three, six-year-old Cameron Mott developed a devastating and progressive brain disorder called Rasmussen’s encephalitis. This rare disease attacks the right side of the sufferer’s brain, causing a rapid decline in mental faculties and –if left untreated –eventually leading to partial paralysis. Cameron’s condition has left her with extreme epilepsy. Her daily life is plagued by sudden and frequent fits forcing her to wear a protective helmet at all times. She is only free from the fits for a precious 30 minutes at the beginning of every day, before she collapses and falls victim once more to the relentless cycle of seizures.

This film follows the Mott family as they travel from their home in North Carolina to the Johns Hopkins Medical Institute in Baltimore for a radical treatment. Cameron is about to undergo a complex operation called a hemispherectomy, which is the last resort for doctors treating children with her condition.

During seven hours of surgery, led by Dr George Jallo, chunks of the right side of Cameron’s brain are painstakingly removed. Though the operation is incredibly delicate and difficult, time is of the essence, since the cavity left in Cameron’s head fills with cerebral-spinal fluid at a rate of a teaspoonful every five minutes. Once surgery is over, Cameron is immobilised –any movement could dislodge the remaining half of her brain. For 48 hours, Shelley and Casey Mott cannot hold or hug their little daughter.

Just eight days after her radical treatment, Cameron pedals down the hospital corridor on a tricycle, laughing as she cycles. Her parents believe it is nothing short of a miracle and even her neurosurgeon is amazed by the little girl’s rate of recovery. “I always think that these children… are going to be dependent on their parents for the rest of their lives,” admits Dr Jallo.

However, surviving the operation is only the first hurdle for Cameron –her real challenge is yet to come. The effects of the surgery are similar to the results of a major stroke, so there is a chance that the entire left side of the little girl’s body could be permanently paralysed.

Incredibly, it is also possible that Cameron will make an almost complete recovery. At her age, the brain has a remarkable capacity to reorganise itself – with one side of the brain effectively taking over the functions of the other. All Cameron’s parents can do for now is wait and hope, but they remain confident that their daughter’s determination will see her through.

Elsewhere, in London’s Great Ormond Street Hospital, 14-year-old epileptic Sean Goldthorpe has his brain connected to a machine. As Sean reads aloud, neurologist professor Helen Cross sends electric charges into the part of his brain that controls language. Sean stumbles and is unable to read further, becoming anxious and frustrated. This disquieting session is part of an invasive monitoring programme being used by Professor Cross to pinpoint the part of Sean’s brain causing his fits. It is an exhausting ordeal for Sean, but he is willing to go through with it if it will give him an opportunity to be seizure-free.

Professor Cross eventually discovers that Sean’s fits are emanating from his hippocampus – an area deep within the brain responsible for emotion and memory. As he grows older, the effects of Sean’s seizures are spreading to the language area at the back of his brain via a lesion. To stop his fits, Sean will need to have both of these areas of his brain removed, but doctors will only go ahead with the operation if they are certain that his memory and speech will not be damaged irreversibly. Sean’s parents now face an anxious wait as their son’s future lies in the doctors’ hands.

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