RELATED CONTENT: Suffering kids shunted from pillar to post
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RELATED CONTENT: Interstate help for Darcy
Eurobodalla residents living with the condition hydrocephalus including Melissa Cork of Narooma have welcomed a political hand from interstate in the long-running campaign for a national registry of the medical intervention known as a shunt.
Moruya’s Jane and Brad Coppin live with the daily fear their daughter, Darcy, could be the next victim of a failing shunt – a device that drains fluid from the brain’s of hydrocephalus sufferers.
The family has been pushing for several years for the establishment of a national shunt registry, which would help researchers discover why about half of all shunts fail within a few years of being inserted.
Mrs Coppin was heartened this week, after knockbacks from successive Federal health ministers, to learn a South Australian Sentator was taking up the cause after a staff member’s child succumbed to the complications of hydrocephalus.
Family First Senator Bob Day has written to the Minister for Rural Health, Fiona Nash, asking for her support.
Senator Day took an interest in the issue after his chief of staff, Rikki Lambert, identified the shunt registry campaign.
Narooma resident Melissa Cork who was born with Hydrocephalus was excited to hear about the possibility of a national shunt registry, as she believed this would help families and researchers tackling the condition.
The 33-year-old said still had the same shunt that was fitted back when she was about 2 years old, although the shunt tubing was lengthened at age 8 to allow her to grow.
Others were not so lucky and she knew of many others who had shunts failed. "My shunt could still fail at any time which is of course is a real worry but I have been lucky," she said.
Born with spina bifida and hydrocephalus, conditions which often went hand-in-hand, Ms Cork said she was keen to raise awareness of the condition and what sufferers were facing.
Rikki and his wife Kristin lost their second son, Caleb, to a shunt failure aged 13 months in 2005.
“I know hydrocephalus isn’t high on the national health radar, but it affects the children and families in significant ways,” Mr Lambert said.
“In our case, we lost our child. Nothing will ever replace Caleb. If Family First can be a champion for a community-driven cause that prevents death or serious injury to children, that’s part of Caleb’s legacy.
“The shunt is the most commonly failing medical device and can kill a child. Those facts alone should be reason enough for the government to invest in research that equates to about 0.005% of the Federal Budget.
“I have the utmost respect for the neurosurgeons, doctors and health professionals that did everything they could for Caleb, but these professionals need the best tools available.
“When they have to work with faulty devices, they grieve too to see children, patients and families suffer tragedy and heartache.”
Mrs Coppin welcomed the Senator’s interest and said such a registry was a matter of life or death.
“The establishment of a shunt registry will have real effects for those living with hydrocephalus, in terms of the potential of fewer surgeries, reduced chance of shunt malfunction and better long term health benefits,” Mrs Coppin said.
“It could be the difference between Darcy undergoing brain surgery in the next few years or sooner; experiencing infection or surgeries which may affect her long term health and well being.
“I urge the Federal Government to reconsider their decision not to fund a shunt registry and invite all politicians to consider what this means for individual and families living with hydrocephalus.
The family of Malua Bay’s Zoe Brown has also been campaigning for the registry.
