As The Royal Children’s Hospital (RCH) celebrates performing epilepsy surgery on its 500th patient, its experts urge parents of children with uncontrollable epilepsy to discuss brain surgery with their child’s paediatrician.
RCH neurologist and epilepsy program coordinator, Dr Simon Harvey, says children with severe, uncontrolled epilepsy have a poor quality of life and the possibility of developing intellectual impairment or autism, but surgery can reduce the number, severity and impact of seizures, with more than half of those children who undergo epilepsy surgery becoming seizure-free.
“Parents often have an unfounded fear of surgery and see it as a last resort, but they are not always aware of how devastating seizures can be until it’s too late. If we can operate on appropriate children early enough, we can often make a big difference to where their lives are heading,” Dr Harvey says.
Six-year-old Elijah Smith was having 80 seizures a day when her parents Lewanna and Robert agreed to her undergoing surgery in September last year.
Before the 8.5 hour surgery, Elijah had only been able to cope with school for 45 minutes each day; now she is completely seizure and medication-free, and able to attend school full-time.
“She would seizure night and day and be constantly exhausted. We needed to be there every time she fitted to provide her with emotional and physical support. Robert and I would alternate nights to be there with her,” Lewanna says.
“She couldn’t live her life the way she was. Then (surgeon) Wirginia Maixner and her team worked their magic and she’s now leading a normal life, completely free of seizures. You wouldn’t know she’s been to hell and back.”
One in 20 children will have a seizure at some time in their life, and 10 per cent of these children will go on to have epilepsy with repeated seizures. More common and milder forms of epilepsy are usually genetic in origin and children are likely to outgrow it.
Only about a fifth of children with epilepsy will have uncontrolled seizures as a result of a brain injury, tumour or malformation, and it is a proportion of these children who may be helped by surgery, Dr Harvey says.
“It’s one of the most rewarding things you can do as a child neurologist, stopping uncontrolled seizures and improving a child’s quality of life and development,” he says.
The RCH performs about 45 epilepsy operations each year, with five-year-old Oliver Terrell becoming its 500th epilepsy surgery patient last week. Oliver and his parents Kimberley and Mark were just one of the families who attended the 500th epilepsy surgery patient celebrations at the hospital this morning.
To donate to The Royal Children’s Hospital Good Friday Appeal, go to goodfridayappeal.com.au or phone 9292 1166.
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