This year I turn 40 and I’m donating my birthday to the awareness of Hydrocephalus and The Australian Shunt Registry.

Why?

Well my most special and proudest achievement in this colourful 40 years is my daughter, and “Miss K” has hydrocephalus.

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Miss K underwent brain surgery (an endoscopic third ventriloscopy), a month before her third birthday, while she is doing great and many of you wouldn’t even realise, we live with no answer as to what happens next? And for a control freak like me that is tough. But for many families living with hydrocephalus, it is an even tougher journey than ours has been so far.

Every year in Australia, 1 in every 1000 children are born with Hydrocephalus.

Many more children and adults acquire hydrocephalus as a result of tumours, accidents, bleeding or infection. Hydrocephalus is a life-threatening condition and the most common reason for neurosurgery in children. It occurs when excessive CSF (cerebrospinal fluid) accumulates in the brain.

The treatment, inserting a shunt, has the HIGHEST FAILURE RATE OF ANY MEDICAL IMPLANT. 50% fail within 2 years of insertion, 30% within 3 months. These statistics are even higher in children. The prognosis for those living with Hydrocephalus depends on how their body accepts the shunt system. The main complications experienced are shunt blockage, disconnection and infection. Each surgery is extremely invasive and risky. The infection rate of any shunt surgery is 10%, significantly higher than any other surgery.

The Australian government commits NO funds to Hydrocephalus research. The NSW Government has rejected the proposal to implement a shunt registry.

So what is the Shunt Registry?

I recently wrote to the Neurosurgical Society of Australasia and received this information from Dr Mark Dexter the Society’s President…

During 2013 the Neurosurgical Society of Australasia (the Society) received funding from the Commonwealth Department of Health and Ageing to move forward with the development of an Australian Shunt Registry.

The purpose of the Registry is to improve patient safety and quality of care for patients with hydrocephalus and related conditions by monitoring and analysis of shunt related procedures performed throughout Australia.

The Society contracted Monash University, through its Clinical Informatics and Data Management Unit within the Faculty of Medicine, Nursing and Health Sciences to assist in the development and hosting of the Registry database. This initial development has been completed and the Registry database is ready for data.

During 2015, ethics applications were approved by the Sydney Children’s Hospital Network to commence collection of data for the Registry across the Sydney Children’s Hospital and The Children’s Hospital at Westmead. Data collection is expected to commence within the next few months. The long term goal is to expand the number of hospitals so that we are collecting data from all Australian hospitals undertaking shunt procedures.

While the Government funding contributed towards establishment costs we have been advised that any further development, implementation and maintenance funding will be the responsibility of the Society. As a small not for profit organisation, your proposed donation would be significant in assisting with the implementation and expansion of this important Registry.

Shunts systems are used very successfully in the treatment of hydrocephalus however complications can be common which often require repeat surgery. Ultimately our goal is to improve the quality of life for people living with hydrocephalus and we believe the Registry is an important initiative in achieving this.

Why I am supporting the Australian Shunt Registry.

The people living with hydrocephalus and the neurosurgeons who look after us believe in the Shunt registry. All that is needed is financial backing. The initial cost of implementation is $200,000; approximately 5% of the annual cost of shunt-related issues in one children’s hospital in Sydney.

The implementation of the Australian 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.

We need to bring this issue to the government’s attention and highlight the enormous positive long-term effects this will have on so many Australians as well as the financial benefits for the Australian Health system and benefits for Hydrocephalus research.

The thought of Miss K having to undergo neurosurgery again in the future or to have a shunt inserted is extremely hard to consider, particularly when our government has the opportunity to implement the shunt registry and assist in the long-term outcomes of those living with Hydrocephalus.