This week, we are introducing the Our Time In Hospital Series. This series has been created to help tell your stories, and let others out there know, that they are not alone.
For our first post in this series, we hear from Rebecca, who runs her own small business, The Coloured Knot. Rebecca and her family spent time in hospital with Harley. She writes about the importance of advocating for your child, and pushing for answers when you think something isn’t right.
Below is their story;
I am Rebecca, we have 4 children and live in Western Victoria. Our 3rd son, Harley, has Craniosynostosis, which means one of his sutures in his skull was fused, therefore not able to grow and give his brain room to move.
He had his first surgery at 12 months old. However this didn’t work, and we started seeking out second opinions after our first team of surgeons would not listen to our concerns post op.
We ended up going interstate for a second surgery. In doing so, we found out he also had a syndrome called Muenke, which was causing his hearing loss & developmental delays. At this time, he was also suffering from chronic Intracranial Pressure from the first operation not being performed correctly.
By moving hospitals, and finding a new team, we were then able to get him more appropriate treatment, as well as moving into Early Childhood Intervention which has helped him immensely with his development.