VIDEO: ‘Brutal’ surgery reshapes skull for baby Laythen
IT WAS the day after Jasmine Schneider had given birth to a baby boy when her paediatrician told her little Laythen had craniosynostosis.
"All I heard was her saying 'surgery', 'blood transfusions' and 'he'll be fine'," Jasmine said.
"I was in total shock because I had never heard about it before."
Laythen was born with scaphocephaly, or sagittal synostosis, which meant his head was growing long ways.
The family headed to Brisbane for treatment that was reportedly refused due to Layten's age, so it wasn't until Jasmine met Rachel through their mutual paediatrician that she first heard about the world-class specialist clinic in Adelaide.
Laythen would then undergo a "brutal" and extensive surgery to correct his skull, by removing and reshaping bone, with wires placed into his forehead.
During the surgery the infant lost 800ml of blood and required two blood transfusions.
"It is pretty brutal what they do and if you look at actual photos it makes me cry... but these babies are truly amazingly brave and it's a miracle to see how quickly they do recover," she said.
"Without meeting Rachael I would probably still be waiting for someone to tell us what was going on.
"There are probably women out there in the area who are going through a similar thing but don't know what it is, don't know how to get help or feel like they are over-reacting."
Laythen is now nine months old, and at 10 weeks post-op Jasmine says you wouldn't think he had anything done to him… other than the scar that runs from ear to ear.
"As parents we are the best advocates and voices for our children and a mother's instinct is always right - believe in yourself and your gut," she said.
"We just want other mothers out there to know about cranio and know there is help out there."
What is it?
Craniosynostosis consists of premature fusion of one or more cranial sutures, often resulting in an abnormal head shape.
The condition may result from a primary defect of ossification (primary craniosynostosis) or, more commonly, from a failure of brain growth (secondary craniosynostosis).
Simple craniosynostosis is a term used when only one suture fuses prematurely.
Complex or compound craniosynostosis is used to describe premature fusion of multiple sutures.
When children with craniosynostosis, usually complex, also display other body deformities, this is termed syndromic craniosynostosis.
Raised intracranial pressure is rare with fusion of a single suture. It can occur in primary craniosynostosis when multiple sutures fuse.
Although the major morbidity is due to the abnormal shape of the skull, intracranial pressure can be elevated in primary. This occurs with a high frequency in multiple-suture synostosis and rarely with single-suture synostosis.