Welcome to the latest edition of the HSA newsletter, Connections.

Welcome to the Winter edition of the HSA newsletter. I hope everyone has had a good start to 2024 now we are heading to half way through.

The AGM was held on the 25th of February and the following office bearers were elected:

President – Andrew Garde
Vice President – Robyn Campey
Treasurer – Brian Millar
Secretary – Michelle Goldsmith
Communications x 2 – Bree Henry and Kerryn Csik
Webmaster – Sean Cooney
General Committee Member x 2 - Vacant
Public Officer – Wendy Brown
Welfare Chair – Erin Millar
Welfare Officers:

QLD – Erin Millar
NSW – Jan and Janice Steinfurth
VIC – Andrew Garde

No nominations were received for other states/territories and they are currently vacant.

Post the election there are a number of committee and welfare officer positions vacant so if you are interested in helping out please contact me via email president@hydrocephalus.org.au.

Since the last update in February about the Kitea sensor a number of events have occurred. This included the ethics and other applications required before human trials of the kitea sensor commenced. I was contacted by Kitea asking for a letter of support for the application which also outlined their consultation with the HSA, the committee was consulted and agreed that we could supply the letter.

Another major milestone for the sensor is the successful completion of the animal trial which is good news for the phase 1 trial that looks now to be starting in the May/June period which is slightly later than previously advised.

Kitea have also been doing a number of media interviews so if you would like to know more about them a good place to find them is via LinkedIn as kitea post them there.

The committee are developing a survey of how people with hydrocephalus or carers feel they have been treated by their neurosurgeon and hospital. This data will be aggregated and I will be advocating to the Neurosurgical Society of Australasia (NSA) about the results to lead to improvements in areas that need it and to advise what they do well, this could also lead to further advocacy in partnership with the NSA to lead to improvements in the health system. My thanks to Kerryn Cisk for her work developing this survey.

The next round of face to face meetings are coming around, keep an eye on the website and our Facebook page for further information.

Brisbane – Saturday 4th May
Melbourne – Sunday 19th May – Camberwell Library
Sydney – Sunday 26th May

Now the AGM is over the committee can focus on the work to develop our strategic initiatives further, please keep an eye out for further updates. I hope all our members and supporters are well and I thank you all for your support.

Andrew Garde

President, HSA

SHUNT REGISTRY UPDATE

UPDATED 27 MARCH 2024

The registry now contains 6,215 records belonging to 4,531 distinct patients. Currently, 64 sites are authorized to provide data, with 57 located in Australia and 7 in New Zealand.

Data period for this report December 2016 – 27 March 2024

Demographics

GENDER

48.5% Male

50.6 % Female

0.9 % gender removed (partial opt-out)

AGE

62.7 % participants >= 18 years

68.6% admissions >= 18 years

35.7 % participants <18 years

29.8 % admissions < 18 years

1.6 % Date of Birth removed (partial opt out)

ADMISSIONS

3543 One admission

621 Two admissions

204 Three admissions

87 Four admissions

76 Five or more admissions

OPERATION TYPE

CLINICAL DIAGNOSIS

Information provided by Katrina Smith, Shunt Registry Manager (shunt.registry@nsa.org.au)

HYDRO WARRIOR SHOUT OUT

MEET VIOLET

Our hydro warrior Violet was diagnosed with obstructive hydrocephalus in 2019 at just 7 weeks old when the doctors found a brain lesion, causing hydrocephalus, which a biopsy later revealed to be a blood clot from a previous bleed. It took us by complete surprise as she barely presented any symptoms initially! Both the pregnancy and birth went extremely well, her prenatal scans were good and we had a beautiful homebirth (with midwife present) and no complications. It wasn't until 4 wks old that we started having problems. Violet was getting progressively worse, not sleeping, then sleeping too much, not feeding well and not responding to cues like a newborn should. Violet's brother was 19 months old at the time we were beginning to wonder how parents of a toddler + a newborn juggled it all, thinking it shouldn't be this hard!

She had been making odd faces and her eyes gazed downward most of the time, so we asked our maternal health nurse who advised us this was a normal 'tired sign' of newborns. That gave us re-assurement that she was okay so it wasn't until 7 weeks old that she saw a GP for her first checkup where they noticed her downward gaze, nystagmus (involuntary eye movements) and bulging fontanelle straight away and was rushed to the Royal Children's Hospital for scans & urgent surgery. She now has a VP shunt and the brain lesion was drained in surgery. Less then a year later, her shunt got blocked with debris likely from the clot and needed another surgery to revise the shunt. And a year after that, we spent 3 weeks in hospital due to an infection around the shunt tract. Luckily she didn't need surgical intervention as they were able to prevent the infection from entering the shunt.

She's now 4 years old and lives with hearing aids, a global delay and hypotonia, plus a referral for autism assessment but despite all this, she is the happiest, most resilient person I know and loves her happy life surrounded by a loving & supporting family and care team! I will never forget the look on her tiny face after waking up from her first surgery. For the first time in her life, she was finally not in pain and just looked at me with the bravest face I'd ever seen.

Please share our story to raise awareness for hydrocephalus so that symptoms like hers aren't mistaken for 'tired signs' and that people suffering from hydrocephalus can get the proper care they deserve! And for those suffering from this, stay strong and keep advocating for hydrocephalus. Our thoughts and prayers are with you!

-by Violet's Mum, Aimee

CLICK HERE TO SHARE YOUR STORY

THE LATEST ARTICLES

Hospital Escalation Process Resource - VICTORIA

By Erin Garde

There’s nothing quite like the realisation that something might be up with your shunt to strike anxiety in the hearts of the people living with hydrocephalus in our community. My own hydro warrior husband describes it as a fog descending, blurring the edges of his senses, with a side serve of an excruciating headache that only happens when there’s something wrong with his shunt.

It’s at these times, when you need help the most, that it’s sometimes the hardest to advocate for yourself. Unfortunately and for various reasons, sometimes hospitals aren’t the best at responding to suspected shunt failure, even though it is a medical emergency that needs to be resolved as soon as possible.

Every hospital in Australia should have a documented process you can use to escalate matters, but sometimes it’s challenging to find out what the process is and how to use it. We've compiled a handy guide detailing the escalation processes for the hospitals we're most in touch with, all of whom contribute valuable data to the Australasian Shunt Registry.

CLICK HERE TO DOWNLOAD THE RESOURCE (VICTORIAN HOSPITALS)

Do you have a topic you'd like us to write about? Email news@hydrocephalus.org.au with your suggestions!

upcoming meetings

We're excited to extend an invitation to all Hydrocephalus Support Association (HSA) members for our upcoming Member Meetings.

These in-person gatherings are a cornerstone of our community, fostering connections and facilitating shared experiences. Attendees will also gain insight into HSA initiatives, understand our impact on the Hydrocephalus community in Australia, and learn ways they can contribute to our mission. No matter where you are in your Hydrocephalus journey—whether newly diagnosed, a long-term patient, or a support person—we warmly welcome you to join us at our next meeting.

Brisbane Meeting

Saturday 4 May

2pm onwards

Nundah Library

1 Bage Street, Primrose Ln

Nundah QLD 4012

Parking available onsite

View Facebook Event

Click here to sign up for the ZOOM meeting

Melbourne Meeting

Sunday 19 May

2pm onwards

Camberwell Library Room 1

340 Camberwell Rd

Camberwell VIC 3124

Parking available onsite

View Facebook Event

Click here to sign up for the ZOOM meeting

Sydney Meeting

Sunday 26 May

1:45pm onwards

Ermington Scout Hall

367 Kissing Point Rd

Ermington NSW 2115

Parking available onsite

View Facebook Event

Click here to sign up for the ZOOM meeting

welfare CONtacts

BRISBANE

Erin Millar

0434 103 814

qld@hydrocephalus.org.au

SYDNEY

Jan Steinfurth

02 9586 1057

JSteinfurth@hydrocephalus.org.au

MELBOURNE

Andrew Garde

0438 172 141

president@hydrocephalus.org.au

support resources

We all find ourselves in need of support from time to time. See below for some valuable resources.

SYNAPSE - Australia's Brain Injury Organisation

Call 1800 673 074 or complete the contact form online

Carers’ Australia

Call (02) 6122 9900 or visit their website.

Beyond Blue

Call a counsellor on 1300 22 4636 or click here to chat to a counsellor online.

Lifeline

Call 13 11 14 or click here to use the online chat.

Next Sense

This service supports people with hearing and vision loss. Click here to find your nearest centre and their contact details.

Discrimination

If you are experiencing discrimination, you can make a complaint via the Australian Human Rights Commission: https://humanrights.gov.au/complaints

There are also State/Territory Human Rights Commissions that can provide more specific assistance. If you are experiencing discrimination, you shouldn't be! Be sure to seek advice if needed.

Learn more here: https://www.fwc.gov.au/discrimination

REQUEST A MEDIC ALERT CARD

If you require a Medic Alert Card for Hydrocephalus, please send your information to Jan at jsteinfurth@hydrocephalus.org.au. Jan will need to know if you have a shunt or a 3rd Ventriculostomy. Medic Alert cards are available upon request to all HSA Members!

MEET OUR HSA Committee Members

Andrew Garde

President

0438 172 141

president@hydrocephalus.org.au

The Hydrocephalus Support Association is run by a committee, who are elected into their positions each year at the Annual General Meeting.

Everyone who works in the Hydrocephalus Support Association is a volunteer.

Most of the committee members work full or part time in paid employment, and they fit in their commitments to the HSA in addition to work and family life.

Robyn Campey

Vice-President

CLICK TO EMAIL

Brian Millar

Treasurer

CLICK TO EMAIL

Michelle Goldsmith

Secretary

CLICK TO EMAIL

Kerryn Csik

Communications

CLICK TO EMAIL

Bree Henry

Communications

CLICK TO EMAIL

Sean Cooney

Webmaster

CLICK TO EMAIL

Wendy Brown

Public Officer

CLICK TO EMAIL

Erin Millar

Welfare Officer QLD

CLICK TO EMAIL

Jan Steinfurth

Welfare Officer NSW

CLICK TO EMAIL

Andrew Garde

Welfare Officer VIC

CLICK TO EMAIL

VOLUNTEERS WANTED

We are on the look out for some more volunteers here at the HSA! If you feel you would be suited to one of the available roles, please reach out to our President, Andrew Garde at president@hydrocephalus.org.au for more information.

Welfare Officers

Our Welfare Officers are available to support those with Hydrocephalus and their families. This wide-ranging role helps to educate and empower and will assist the HSA in hosting Monthly Online Peer Support Meetings, as well as other Welfare initiatives. To apply, please register your interest with the HSA President, Andrew Garde by email at president@hydrocephalus.org.au.