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EDITORIAL: Suffering kids shunted from pillar to post
A Broulee mum is calling on the Federal Government to fund a shunt registry and says it is the first step to doctors and nurses being more informed about hydrocephalus.
Kerrianne McGahey’s daughter Zoe, 7, has hydrocephalus and requires a shunt to drain fluid from her brain.
Because there is very little information available about Zoe’s condition, Ms McGahey said she is “living in the dark” when it comes to symptoms of shunt failure.
Zoe’s shunt failed in November 2013, but it took weeks for doctors to realise what was making her sick.
“She was thirsty all the time and had no energy,” Ms McGahey said.
“It was only when they noticed her blood sugar levels were low that they admitted her into hospital.”
Ms McGahey said getting a shunt registry funded was the first, and biggest, step to finding out more about the condition.
“Signs and symptoms that the shunt is failing can be different for everyone, which is the problem,” she said.
“Because there are so many ways it can happen and so much different information out there, there is no real knowledge.
“There is no one source of information for doctors and specialists to access.
“You pretty much wait for the shunt to fail to find out what your child’s symptoms of shut failure are.”
Having a registry would help educate future nurses, GPs and specialists, Ms McGahey hoped.
“All the information is in our kids. That information, once entered into a central registry data base, will flow through to our local community,” she said.
It is not only about neurosurgeons, it is about training nurses, GPs and casualty doctors in towns like Moruya.
- Kerrianne McGahey
“It is not only about neurosurgeons, it is about training nurses, GPs and casualty doctors in towns like Moruya.
“It should become part of nursing and medical degrees so you can go to your local doctor and they will have some idea about hydrocephalus.
“It is dreadful having no one here that knows.”
Ms McGahey is in the third year of a nursing degree and hoped one day there would be specialist neurology nurses in regional towns.
“It is a passion of mine that they should be in rural hospitals, as well as city hospitals,” she said.