AMANDA Locke spent the first six weeks of her child's life in tears after Googling "How to fix cranio".

The Middlemount mother said her journey to a craniosynostosis diagnosis for her daughter Imogen was not a smooth one, but it was trusting her instincts that got her through.

"From the minute she was born I knew something was wrong, you could literally see the ridge through her skull," Amanda said.

"I was told to just go home and come back in six weeks to see if it had self-corrected.

"After asking doctors, nurses and midwives, I even asked the guy who delivered my tea and coffee at the hospital, 'Do you think something is wrong with my baby's head?', because nobody wanted to give me the time of day."

Amanda Locke with her husband Rowan, son Kobi and daughter Imogen Photo: Contributed
Amanda Locke with her husband Rowan, son Kobi and daughter Imogen Photo: Contributed Trinette Stevens

After being sent to Townsville and Brisbane to consult private doctors, it wasn't until Amanda found a group on Facebook that she heard about a world famous clinic here in Australia.

Not expecting a reply, she immediately emailed the unit's lead specialist Professor David David with a photo of Imogen's head.

(Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses by turning into bone (ossification), thereby changing the growth pattern of the skull.)

 

 

That afternoon, Prof David called and spent an hour on the phone talking her through the surgery.

The very next day Amanda and her husband decided it was the right choice.

"We made the decision to take her to Adelaide as the multidisciplinary approach really appealed to us. The surgery was incredibly scary as you can imagine," she said.

"The quote I got from Queensland was $7000 and (Dr David's) out of pocket expense was $800.

"And yet no one told me about Adelaide. No one recommended it once you had selected it too... it is just incredible."

Now one year old, Imogen who has just returned from her six month check-up has been doing well since her surgery.

All children following up from the surgery require check-ups with the team until they are at least 16 years old.

SUPPORT

THREE mothers have benefited from each other's support, and they want other parents to know they are not alone.

Anyone looking for support through their children's craniosynostosis diagnosis is welcome to email the group.

Jasmine: jasminegrenfell@bigpond.com

Amanda: amandaree@live.com.au

Rachael: raenpaul@bigpond.com



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