Bulli toddler Sophia Jans is back home after a community campaign led to pioneering surgery in the US to save her leg.
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The 21-month-old was born with a rare limb deficiency called fibular hemimelia, and in Australia the only option available to her parents Chris and Carley was to get her leg amputated.
However the couple embarked on a desperate internet search for further options, which led them to US limb specialist Dr Dror Paley.
‘’We were left with the devastating choice of amputation or reconstruction,’’ Mrs Jans said.
‘’We chose the latter as we wanted to give Sophia every opportunity to live and function on her own two feet.’’
At first the hefty $250,000 price tag for the US surgery seemed insurmountable, however a groundswell of community support helped the Jans’ reach that target.
Sophia’s condition meant she had no fibula in her right leg, a shortened tibia and just three toes, so she required a limb-lengthening operation and a procedure to address the deformity in the foot.
She underwent the operation at Dr Paley’s Florida hospital on January 20. It included attaching an external fixator to her leg with struts that needed to be wound up by 1mm a day – they’ve now reached their limit of 5cm.
‘’She’s gained 5cm in length in her leg which is fantastic and now she’s in the consolidation phase, as the bone calcifies,’’ Mr Jans said.
‘’In the next two to three months she will need to go back to the US to have the fixator taken off, and a cast put on for a further four weeks.
‘’Then there will be intensive physio, but hopefully she’ll be able to walk without anything attached to her leg.’’
There is pain and discomfort for Sophia; it’s not just about lengthening the bone – the nerves, muscles and tendons also need to stretch. However hydrotherapy and other exercises are helping the little girl who, like others her age, just wants to play.
‘’She’s always on the move,’’ Mrs Jans said. ‘’She certainly hasn’t let the reconstruction process inhibit her ability to be a toddler.’’
There’’ll be more limb-lengthening surgery for Sophia in years to come, as she grows. But for now, it’s one step at a time.