Despite undergoing 29 operations for spina bifida and hydrocephalus, five-year-old Amber started primary school on schedule. Her mother, Leanne, shares their journey, from the difficult diagnosis to the hope for a peaceful Christmas.
Amber started school on schedule this year, after undergoing 29 operations"I’m just hoping that we can get through Christmas without Amber being readmitted to hospital", she says, referring to her five-year-old daughter.and hydrocephalus - which builds up fluid in her brain.
"I was told 80% of parents who got this diagnosis then terminated the pregnancy because the outcome wasn’t very good at all," she recalls. After seven days, Amber was undergoing a second surgery - this time to place a shunt in her head to try andThe shunts have regularly failed since Amber was born, meaning she has endured repeated surgeries try and fit her with one that worked."I completely broke down in hospital.
However Amber has developed into a girl described by her mum as "a social butterfly", one who is always curious and wanting to know every detail about people she meets. She is also close to big sister Lalia, who's "like her second mum"."She’s so cheeky and sassy. You never know what she’ll come out with next."Last December Amber and her family experienced one of their toughest periods, when her hydrocephalus caused her to suffer painful headaches and vomiting.
The procedure was "traumatic" for both Amber and her mum, as it saw two metal rods placed in her head and then rotated for 10 days."I just burst out crying, as I knew what it would mean. Amber had long hair and was going through enough without having to wake up being bald.
Amber Spina Bifida Hydrocephalus School Operations Christmas Leanne
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