An Australian mother has spoken out about how her ‘gut instinct’ led to her daughter’s diagnosis with a rare condition.
Julie Akmacic’s daughter Lucia – or Lucy as she’s known – was around four weeks old when Julie and her partner discovered no hats would fit their little girl.
‘Around this time, her dad and I noticed that her forehead jutted forward and the rest of her head was quite elongated - a bit like a football,’ Julie tells New Idea.
‘No hats would fit her and she found it very difficult to lie on her back with her head facing forward.’
In addition to this, Lucy had difficulties latching on to breastfeed so Julie took her little girl to a paediatric osteopath to assist.
‘Once this hurdle was overcome, I then turned my attention to her head and ask the osteo whether I should be worried and they said no,’ Julie says.
‘They led me to believe that with their help her head would improve over time.’
Weeks and then months went by and despite assurances there was no problem, Julie’s gut instinct was telling her otherwise.
‘Following my gut instinct, I began to research ‘strange head shape in babies’ and came across a condition called Craniosynostosis,’ Julie says.
‘The images which accompanied the definition looked very much like Lucy’s head.’
Armed with this information, Julie asked again whether there might be a problem with Lucy’s skull – and says that again her fears were dismissed.
‘It wasn't until Lucy's six month development check when alarm bells really rang,’ she says.
‘Lucy's development was fine and she was thriving but the maternal and child health nurse strongly recommended that a paediatrician look at her head after she found that Lucy’s skull bone joints were overlapping and she couldn’t find her soft spot.’
Following a specialist appointment, Lucy was immediately booked in for a CT scan.
The adorable little girl was diagnosed with Craniosynotisis when she was nine months old.
The condition means her skull had fused too early – meaning there was no room for her brain to grow.
If left untreated, her brain would come under increasing pressure.
‘At the moment Lucy’s brain has not been affected,’ her mum tells New Idea.
Now one year old, she is reaching her milestones and is healthy.
‘But Lucy’s brain grows inside a skull that struggles to accommodate it,’ Julie explains.
‘She could become visually impaired, have pressure build up in the brain, have learning difficulties and have developmental delays.
‘She would also look deformed as her head would continue to grow in a bullet shape which then could result in a life of depression and low self esteem and not to mention severe bullying.
It’s something her proud parents can’t bear to see happen – and so the little girl will undergo major life-changing surgery in March to ease the problem.
‘When Lucy was first diagnosed I was adamant to find the best craniofacial and neurosurgeons who are experienced in treating Craniosynostosis and I discovered the Australian Craniofacial Unit in Adelaide headed by Professor David David,’ Julie explains.
‘Because I know that the best of the best will be operating on Lucy I’m feeling surprisingly calm. She has to have the surgery and knowing that she is in the best of hands brings me a lot of comfort.
‘I’m sure however, when I see her in her hospital gown I’ll be a blubbering mess – what mother wouldn’t be?’
The surgery – known as a cranial vault remodel – will involve her skull from the forehead back being removed, cut up, reconstructed and repositioned to allow room for her brain to grow.
‘The surgery will allow her to reach normal developmental milestones just like any other healthy child and she will grow to look like everybody else,’ Julie says.
‘Once her hair grows back and the scar is hidden you should never be able to know that Lucy’s skull was reconstructed.
‘The thought of what kind of life Lucy would have without the surgery, especially if she grew up to look different ‘is heartbreaking,’ the mother adds.
‘I would love Lucy to look at herself in the future and say ‘I am beautiful, both inside and out’.’
Follow Lucy’s journey on Facebook here