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.’’
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