2 weeks Ago By Michelle Smith
Baby Zoe Muller faces the first of up to 10 complex surgeries in the coming months, but she'll do it with a smile. or signup to continue reading The four-month-old was born with the rare genetic condition Apert syndrome which occurs in one in 65,000 to one in 88,000 births - or less than one case a year in Victoria. Apert syndrome causes premature fusion of the bones in the skull, which can affect the shape of the head and face, and result in fingers and toes that are fused together.
Despite the challenges facing her, Zoe is a happy baby who adores her siblings Max, 9, and Ava, 7, and everyone who loves her, according to her dad Daniel. "She's happy, she's starting to smile and make noises, and she likes standing if you hold her up," Mr Muller said. Since Zoe was diagnosed with Apert syndrome while still in mum Pippie Lewis' womb, the family has been regular visitors at the Royal Children's Hospital, where a suite of surgeons and specialists are on Zoe's medical team.
It was an agonising three weeks for the couple between the ultrasound at 27 weeks that picked up abnormalities, and Zoe's diagnosis. "We've had two kids before and usually the ultrasound you are in and out in 10 minutes. We were there for three hours and they kept going back and forth, making us wait to bring someone else in," he said.
"They said they think there's something wrong with the baby, then they referred us to Melbourne, and we had to wait three weeks until we got down there and saw the specialist and that's when we first heard about Apert syndrome." Zoe was born in Ballarat, Victoria, but with a team on standby at the Royal Children's Hospital to fly up to retrieve her if there were complications. Despite not breathing when first born, Zoe "came good" and has been at home in Ballarat North with frequent appointments at RCH.
Surgeons had planned Zoe's first operation to be on her hands, but a recent development means brain surgery is now most likely. "Her first surgery was meant to be on her fingers, but when we were down there the other week they found some swelling behind her eye which could cause her to go blind ..
. which is very common with Apert syndrome," Mr Muller said. "Now they might have to bring her first neurosurgery forward to 10 or 11 months, before she turns one, to save her from going blind which means they will wait on the hands.
"She is going to have at least eight to 10 surgeries that we know of; then there are others like this that will just pop up." Children with Apert syndrome can suffer from a range of symptoms needing specialists including plastic surgeons, oral surgeons, neurosurgeons, ear nose and throat specialists, dentists, orthodontists, geneticists, speech pathologists, and audiologists. It has been overwhelming for the family to come to grips with Zoe's needs and what lies ahead, and financial fears are compounding the stress of having a medically complex child.
The need to take time off work for Zoe's hospital appointments, medical expenses, travel to and from Melbourne, and the rising cost of living are seeing them slide backward. "I work for myself as a roof tiler and it's been a struggle trying to find work," Mr Muller said. Mr Muller had previously run his business with up to seven employees but now he's working on his own with roof tiling slowing dramatically since COVID.
For a while, he took a job with a construction company but was fired about six months ago for taking too much time off to attend Zoe's medical appointments. "I was pretty gutted from that, and have pretty much been out of work ever since," he said. "My only qualification is roof tiling, my company is still open and I'm still making phone calls every single day.
The cost of living is not free, Pip my partner, her maternity leave is running out and we are pretty much up s**t creek." A friend has set up a GoFundMe campaign to help the couple provide the best for Zoe, Max, and Ava. "Your generosity can make a significant difference in their lives," Georgina Owen wrote.
"Every contribution, no matter how small, will help cover medical expenses (including travel and accommodation), assist with daily living costs, and allow the family to focus on Zoe's health and well-being without the added stress of financial worries." DAILY Today's top stories curated by our news team. WEEKDAYS Grab a quick bite of today's latest news from around the region and the nation.
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