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Baby boy suffering from rare disorder has skull taken apart and put back together in miracle surgery

A baby boy suffering from a life-threatening deformity underwent a miracle surgery to have the bones in his skull reshaped all before his first birthday.

Flex Dan, who will be one this month, was born with craniosynostosis – a rare defect that means the skull’s bones fuse together, giving little to no room for the brain to grow and develop. 

His parents, Lucy and Aaron Dan, from Bega in south-east New South Wales, were told by doctors that Flex’s head was out of shape when Ms Dan was 20 weeks pregnant.

Within days of him being born, Flex was diagnosed with craniosynostosis and would go on to have his first surgery at just nine-weeks-old.

But due to the severity of his condition, Flex required another larger operation.

Last month a team of surgeons managed to remove the fused bones in his skull before reforming them and putting them back together like a jigsaw puzzle.

Flex Dan (pictured with parents Lucy and Aaron Dan) underwent surgery earlier this month to have the bones in his skull reshaped and reformed

Flex Dan (pictured with parents Lucy and Aaron Dan) underwent surgery earlier this month to have the bones in his skull reshaped and reformed

Flex Dan (pictured with parents Lucy and Aaron Dan) underwent surgery earlier this month to have the bones in his skull reshaped and reformed

His mother Lucy, 22, told Daily Mail Australia the surgery lasted for seven hours and Flex was recovering in hospital for six days.

‘The recovery was rough. His eyes swelled shut for three days and he couldn’t see,’ Ms Dan said.

‘We’re hoping it’s the last one (operation) but we aren’t sure because it’s such a rare situation.’

Ms Dan said that during her pregnancy doctors told her Flex may have had a poor quality of life, but she said she and her partner had always been hopeful.

She said that after his first operation there were huge changes to her son’s behaviour.

‘When he was born he didn’t really look at us or focus on us and he wasn’t developing great,’ the mother said.

‘All of a sudden he was so happy and different.’

Flex is seen with a scar on his head following his recent surgery for the condition craniosynostosis

Flex is seen with a scar on his head following his recent surgery for the condition craniosynostosis

Flex is seen with a scar on his head following his recent surgery for the condition craniosynostosis

His family were told their son's head was misshapen while Ms Dan was 20 weeks pregnant. Flex would go onto have his first surgery at just nine-weeks-old

His family were told their son's head was misshapen while Ms Dan was 20 weeks pregnant. Flex would go onto have his first surgery at just nine-weeks-old

His family were told their son’s head was misshapen while Ms Dan was 20 weeks pregnant. Flex would go onto have his first surgery at just nine-weeks-old

The young mother said she’d never heard of the condition and was overwhelmed at the possibility of what may have happened to Flex.

‘We kind of just didn’t have a choice from day one. We thought this (surgery) is going to happen to him or he’s going to die,’ Ms Dan said.

‘It’s not really something you think about when you’re having a baby.’

The couple were even told by doctors there was the choice to abort the pregnancy, something Ms Dan said she couldn’t bring herself to do.

‘There was something about his little face in the ultrasounds and I thought he looked so perfect. I don’t think we’d ever be able to forgive ourselves if we went down that road,’ she said.

Since his recent surgery a few weeks ago, Flex has been making incredible progress

Since his recent surgery a few weeks ago, Flex has been making incredible progress

Since his recent surgery a few weeks ago, Flex has been making incredible progress

Surgeons were able to use 3D modelling for the procedure on the 11-month-old's skull

Surgeons were able to use 3D modelling for the procedure on the 11-month-old's skull

Surgeons were able to use 3D modelling for the procedure on the 11-month-old’s skull 

Since his recent surgery a few weeks ago, Flex has been making incredible progress.

Using 3D modelling, the surgeons were able to carry out several practice surgeries before performing on the little boy’s skull. 

They have since reassured the Dan family that it’s more than likely Flex won’t suffer any intellectual or long term problems from his condition.  

He’ll also be able to play sport like any other boy and the large scar that spreads across his head will soon be covered up by his hair.

During the highly complicated procedure, Flex lost his whole body weight in blood.

He was also on a string of painkillers but Ms Dan said her little boy is recovering well. 

‘He’s doing really well and the surgeons are really happy with his progress,’ she said.

‘He was pretty unfazed after the first surgery but he’s a bit shy now after the recent operation even around family members. He’s turned into a clingy mummy’s boy.

‘But he’s going to live a completely normal life.’       

WHAT IS CRANIOSYNOSTOSIS

Craniosynostosis is a rare birth defect where the bones in babies’ skulls join together too early

The skull can become misshapen and the brain is unable to fully grow and develop

If the condition is not treated, the build up of pressure in the baby’s skull can lead to seizures, blindness or brain damage

The causes of the condition are unknown but are thought to be related to an abnormality in their genes

What food and medication the mother has while pregnant can also affect the conditions 

There are several different types of craniosynostosis and the conditions in babies can range from mild to severe

The condition is mostly fixed through surgery 

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Source: Daily Mail Australia | World News

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