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;


 

Rebecca and family. Their 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.

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.
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.

What did you find most difficult at this time?
 
We found it very difficult to have the right Doctors/People/Therapists around to listen to our concerns and pass them onto the right departments.  We spent a lot of time on phones trying to get through. It was very difficult learning about the condition along the way instead of being informed by the doctors.
 
 
What would you have found helpful?
 
We would have found it very helpful to have had a contact that was always available and coordinated the team according to our concerns.
 
We would have found it so much more helpful to be told more about our sons condition when diagnosed. It is quite a complex case and requires a multidisciplinary approach.
 
What tips would you give to people in this situation?
 
The biggest tip I give parents, is if you think something is wrong with your child, follow your gut.  No one loves your child as much as you.  Make people listen.  Write down everything and get as many opinions as you need to satisfy yourself that your child is receiving the best and most appropriate care.
Harley, was born with Craniosynostosis, which means one of his sutures in his skull was fused, therefore not able to grow and give his brain room to move.

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For anyone who has a child with a diagnosis of Craniosynostosis, and would like to know more about the support available, Rebecca is always willing to chat. You can contact her via the Facebook Page; Harley’s Cranio Journey.
Make sure you take  look at the other family stories in this series.

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Discussion

Comments (1)

  1. We have spent a lot of time in various hospitals with my three Heartkids. I would be very happy to share our story.

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