Koby’s cranial vault surgery
Donation protected
Koby has a condition called Craniosynostosis which is a rare birth defect in which one or more of the fibrous joints between the bones of a baby’s skull (Cranio Sutures) close prematurely (fuse together) before the baby’s brain is fully formed. The brain growth continues to grow, giving the head a misshaped appearance. This affect 1 in every 2500-3000 babies in Australia.
Due to this Koby needs to have a Cranial Vault Surgery (full skull reconstruction) around 10 months of age to correct his sagittal closure. This surgery involves a Plastic and Reconstructive Surgeon and a Neurosurgeon who specialises in craniofacial surgeries.
This surgery involves us having to be away from home for nearly a month, 250kms away from where we live involving lots of expenses. We are required to find our own accommodation during the length of the stay that Koby will be in hospital followed by the recommendation to stay close by for his follow up post operation appointments at the Children Hospital.
He will have an external healing time of 6 weeks and an internal healing process of 12 months for his skull to form “correctly”.
Our Son’s surgery was originally estimated to be in March, but due to the virus last year our surgeons have pushed us back to 30th of June for our boy to receive his surgery. We simply cannot afford to be living on one working wage and keeping up with the medical bills/trips to and from our hospital/eye specialist/pedestrians etc. We have sadly had to come here to keep our family afloat with everything until I can safely return to work for our boy. At this stage we unfortunately are unknown of when that will be.
In March (when Koby’s surgery was originally estimated to be) We were hoping that we could reach enough to support our family through this challenging time and to be fortunate enough to make a donation to another family struggling to going through the same thing, towards the hospital for further research, or to the Craino Care Bears, an organisation that supports families during their child’s medical journey. If we are in a place at the end our this journey we would still love to be able to achieve this as our positive turn around to such a horrible thing our family is soon to experience.
We absolutely do not expect to reach our goal but if we do, not only is our family going to be supported through this but hopefully another struggling family too as we know how hard this can be!
Image of a typical newborns suture compared to a sagittal closure:
CT Image of Koby’s skull in comparison to a regular baby’s skull:
Due to this Koby needs to have a Cranial Vault Surgery (full skull reconstruction) around 10 months of age to correct his sagittal closure. This surgery involves a Plastic and Reconstructive Surgeon and a Neurosurgeon who specialises in craniofacial surgeries.
This surgery involves us having to be away from home for nearly a month, 250kms away from where we live involving lots of expenses. We are required to find our own accommodation during the length of the stay that Koby will be in hospital followed by the recommendation to stay close by for his follow up post operation appointments at the Children Hospital.
He will have an external healing time of 6 weeks and an internal healing process of 12 months for his skull to form “correctly”.
Our Son’s surgery was originally estimated to be in March, but due to the virus last year our surgeons have pushed us back to 30th of June for our boy to receive his surgery. We simply cannot afford to be living on one working wage and keeping up with the medical bills/trips to and from our hospital/eye specialist/pedestrians etc. We have sadly had to come here to keep our family afloat with everything until I can safely return to work for our boy. At this stage we unfortunately are unknown of when that will be.
In March (when Koby’s surgery was originally estimated to be) We were hoping that we could reach enough to support our family through this challenging time and to be fortunate enough to make a donation to another family struggling to going through the same thing, towards the hospital for further research, or to the Craino Care Bears, an organisation that supports families during their child’s medical journey. If we are in a place at the end our this journey we would still love to be able to achieve this as our positive turn around to such a horrible thing our family is soon to experience.
We absolutely do not expect to reach our goal but if we do, not only is our family going to be supported through this but hopefully another struggling family too as we know how hard this can be!
Image of a typical newborns suture compared to a sagittal closure:
CT Image of Koby’s skull in comparison to a regular baby’s skull:
Fundraising team (2)
Sophie Mckay
Organizer
Stratheden, NSW
Brad Goodwin
Team member