AT FIRST glance, Leah Whitlock looks like any other cute four-month-old girl.
But when looking more closely, it is clear something is not quite right.
Leah has a condition called unicoronal craniosynostosis (or cranio) which is the early fusion of one of the coronal sutures.
Leah’s mum Charlene had never heard of craniosynostosis, despite having had four other children, and was shocked to realise how common it was.
She is now sharing the story of her daughter on Facebook to raise awareness.
“Leah is the youngest of five children and despite that until she was diagnosed, I had never heard of the condition, along with many others which is scary considering the statistics,” she said.
“One infant in every 2000 births will have some form of cranio depending on which suture fuses early.”
Ms Whitlock said many wouldn’t notice anything different with Leah.
“Pretty much the shape of head at the moment (is the only clue) but she does look a little different, like she is missing half her forehead,” she said.
“But unless you came forward to ask, you wouldn’t know.
“The only treatment for Leah is major surgery, which can’t be performed until her body is capable of handling the stresses.
“Leah is just about to hit five months of age and we are unable to have the surgery until she is eight to nine months old as she needs to be big enough, strong enough and have enough blood volume for the operation,” Ms Whitlock said.
The first sign something was wrong was just after Leah was born as she had bruising around her eyes.
At first, it was brushed it off as a fast labour.
“It was only after my mother-in-law kicked up a stink that we had an x-ray done and she was diagnosed.”
If left untreated cranio can cause intracranial pressure, brain damage, deafness, blindness and developmental delays.
To follow Leah’s journey or find out more about cranio, visit www.facebook.com/groups/435461326530884
