Stephen's Boys Cranio Medical Expenses
"Ethan was diagnosed with craniosynostosis at birth. This meant that the sutures in his skull fused prematurely, constricting his brain growth and causing his head shape to be elongated. As a result of Ethan's diagnosis and treatment, it was then discovered that Ethan's older brother Liam also had Craniosynostosis and had gone undiagnosed for 3 years.
Ethan underwent a 6 hour reconstruction surgery when he was 12 months old, in Queensland, spent 2 nights in intensive care and a further 5 nights in hospital. Ethan's skull was removed, cut up and reconstructed to try and allow room for his brain to grow and give his head shape a more 'normal' appearance. Unfortunately this surgery was unsuccessful with Ethan looking more deformed than before.
We then sought out the advice of Professor David David, the founder and head of the Australian Craniofacial Unit at the Women and Children's Hospital in Adelaide. 6 weeks after Ethan's first reconstruction, we relocated to Adelaide for a month and Professor David David performed another total cranial vault remodel, giving Ethan a more normal appearance.
On the 28th February, we fly back to Adelaide for a week of extensive tests again. This will Ethan's 6 month post op follow up, and Liam's first lot of tests to determine if he will need the same corrective surgery.
Both of our boys, will be seen regularly with thorough check-ups in Adelaide until they are adults which is proving very costly. The visits generally entail seeing: a Social Worker; an Opthamologist - to check eyesight and any signs of inner cranial pressure; a Neurologist - including visual electronic response tests to check their brain activity; and Craniofacial Surgeons - to ensure their head and faces grow correctly.
