Maddi Hawes and Aaron Smith are raising awareness about hydrocephalus after their son Spencer was diagnosed last year.MONIQUE FREER January 23, 2014 4:30am
Spencer Smith suffers from hydrocephalus, pictured with his parents Maddi Hawes and Aaron Smith, and three-year-old sister Bronwyn.
Each time their infant son cried, Maddi Hawes and Aaron Smith questioned whether it was the normal cry of a baby or the sign that his brain surgery had failed.
‘‘When we first brought him home that was our biggest concern — would we know and would we pick it up quick enough?’’ Ms Hawes said.
Six-month-old Spencer was diagnosed with hydrocephalus at just four weeks old. The condition can be congenital or acquired later in life, and occurs when there is too much cerebro-spinal fluid in the brain.
Born premature at 29 weeks’ gestation, Spencer’s condition was picked up during a routine CT scan after a blood clot on his brain.
The only treatment is the insertion of a shunt, which drains the fluid from the brain.
If left untreated, the fluid collects, causing the head to swell and potentially leading to mental disability or death.
But the shunts only have a 50 per cent success rate in the first two years, and Spencer was not one of the lucky ones.
Last month he underwent emergency brain surgery to reinsert the shunt after it became dislodged.
‘‘Having gone through one failure now, it’s quite apparent when the shunt isn’t working,’’ Ms Hawes said.
‘‘He’s doing really well from that now and he’s back to his giggly, chatty self.’’
The surgery was Spencer’s third in six months, and he faces more if the shunt fails again.
‘‘We’re constantly worried about him or aware of him and the things he’s doing, whether they’re shunt-related or not — and for him personally, only time will tell as to how he develops and if future surgeries may affect that outcome depending on how well they all go,’’ Ms Hawes said.
The condition affects one in 500 Australian babies, but a lack of information left Ms Hawes and Mr Smith feeling vulnerable.
‘‘It was really quite scary at first because we hadn’t heard of it, it was a bit hard to wrap our heads around,’’ Ms Hawes said.
While Spencer’s prognosis is good, Ms Hawes said his condition was difficult because of the limited information and support available to sufferers and families.
‘‘There’s little government funding and research going into hydrocephalus so it’s a struggle for the hydrocephalus communities to get out there and raise the awareness for support for it,’’ Ms Hawes said.
‘‘As long as the shunt works as they hope it will, he is expected to lead a relatively normal life and a healthy, happy one.’’
The family has launched the ‘Saving Spencer’ campaign to raise awareness and funds for hydrocephalus.
‘‘Half of the money we raise through that we’re going to donate to hydrocephalus research and the rest of that will go into future things for Spencer, as there are a few treatments that may arise for him,’’ Ms Hawes said.
‘‘(We’d like) the government to help create a register for it (the condition) of all of the shunt information and the stats on it — how many are in and how many are working and failing — and then from there I guess improvements on why they’re failing and how to make them better so it improves the quality of life that people with the condition will possibly have ahead of them.’’
Jan and Peter Wallace will attend the most emotional Anzac Day dawn service there is.
The Yarrawonga and District Cemetery Trust has been awarded a $50,000 grant from the Department of Health to undertake development work at the Yarrawonga cemetery.
Members of Murchison Book Club are hosting a literary lunch with Vivien Achia, author of Marrying Italian — When Love is Not Enough.
Echuca shearer Franky Atkinson has earned himself a return trip to New Zealand next year after an impressive run of performances in shearing competitions.
William Napier, whose remains lie in Rochester cemetery, received the Empire's highest honour for gallantry while fighting for the British army during the Indian Mutiny.
Tongala family hopes for transplant call for six-year-old.
Family of former Seymour man killed in a road crash in Los Angeles before Christmas set up a Melbourne University scholarship in his honour.
Tocumwal's Don Elgin is aiming to compete at the 2014 Commonwealth Games in Scotland
The Cancer Council Relay For Life fundraiser is a cause close to the hearts, and feet, of many district residents.
Redgum sculpture is carved at Thompsons Beach, Cobram.
Deniliquin Police ConFest Operation nets 76 drug detections.
Murray Goulburn has lifted its milk prices to about $6.66 kg milk solids.
Benalla's Joda Plex was named Goulburn Ovens Institute of TAFEs student of the year at her graduation this month.
Discover unbelievable local deals from local businesses every week in the Goulburn and Murray Valley area with Leapon.com.au!
Search properties for sale or rent across North Central Victoria and Southern NSW. Visit your local website for local homes....
Search for published and unpublished photos from McPherson Media Group newspapers and magazines. All our photos are available to purchase.
Place an advertisement in any one of McPherson Media Group's local newspapers.