A CHIRNSIDE Park mum who lost her young son to a condition she had never heard of has campaigned so other parents don’t experience the same heartache.
Katherine Shields’ son Joseph was aged seven years when he died in May 2013 of sudden unexpected death in someone with epilepsy (SUDEP).
The Grade 2 Edinburgh College Primary student, who loved his mum and dad John and older brothers Jonah and Thomas, was healthy and happy when he went to bed on May 28.
But overnight he suffered a seizure and the next morning his mum made the heartbreaking discovery he had died.
As part of her mission to raise awareness of SUDEP, which she had never heard of before Joseph’s death, Mrs Shields wrote to the Department of Health and Human Services. She asked it be made mandatory for parents to be given information regarding SUDEP when children presented with seizures.
The department agreed to make changes to The Royal Children’s Hospital factsheets on epilepsy and have included information about SUDEP and the use of monitoring devices, which alerts parents when their children are having a seizure.
Mrs Shields said having this information now widely available would save lives.
“This is a huge win in raising awareness. These factsheets cannot only be accessed by all medical professionals, but by parents themselves,” Mrs Shields said.
Joseph had been diagnosed with nocturnal epilepsy after two seizures when he was aged three and four years.
But Mrs Shields changed his diet and he did not have any other seizures until the night he died.
She said she wished she had been told about the possibility of SUDEP, so she could have put things in place that could have helped her son, such as devices that would have alerted them to him having a seizure.
“When I went through this with my son, everything I googled, you had to look hard to find anything about SUDEP, and nothing said your child could die,” Mrs Shields said.
“And now any parent can go to the Royal Children’s website and search epilepsy and find this information.”
In the letter to Mrs Shields, Department director Jon Evans said the changes to the fact sheets would encourage discussion on SUDEP between parents or carers and health professionals, and contribute to improved awareness of SUDEP.
The revised fact sheet on epilepsy is now available on the Kids Health Info website.