Changing Faces, Changing Lives
Orlando’s Story
Meet Orlando – Diagnosed with Sagittal Craniosynostosis at just 8 weeks old, he underwent skull surgery at 14 weeks, followed by 8 months of helmet therapy.
His mum Stefanie recalls how overwhelming those early days were; from receiving the diagnosis to making major decisions on his behalf. What helped most was connecting with other families and realising they weren’t alone.
Now 14 months old, Orlando is a happy, thriving little boy. Stefanie says their family has been forever changed by the journey and is deeply grateful for the care they received. “Every day is a gift.”
She hopes more people understand how common craniofacial conditions are – and how vital early diagnosis is. Her advice to other parents? “You’re in safe hands. The road will have tough moments, but these kids are resilient. You’ll be so proud of them.”
Interview with Orlando’s Mum Stefanie…
Age at Diagnosis?
8 weeks old.
What treatment have you or your child had for this Craniofacial difference?
My son Orlando had skull surgery at 14 weeks of age – a strip craniectomy. Following surgery, Orlando completed 8 months of helmet therapy, under the care of Sydney Children’s Hospital (Randwick).
What do you remember most about the early days of treatment?
Receiving Orlando’s diagnosis was the worst day of my life and making a decision on behalf of our son felt so huge and overwhelming. The surgical team reassured us that this was a relatively common surgery, which eased our anxiety a little bit. I remember spending hours every night researching and found reading other people’s journey’s comforting, because we weren’t alone in our experience.
How has this Craniofacial difference impacted your life and family?
We are forever changed following Orlando’s diagnosis and treatment journey. Our eyes were opened to a world we had never been a part of before and we are truly forever grateful and thankful for the care our son received. He is a happy, healthy and thriving 13 month old little boy now and that is because of the early intervention surgery and treatment. We take nothing for granted, every day is a gift.
Is there something you wish more people knew about this condition?
I wish people knew how common it was for a child to have some kind of craniofacial condition. Despite its commonality, it’s unfortunately a condition that can be misunderstood, so it’s vital parents advocate for their child! If you have concerns or suspicions, push for a referral to your closest craniofacial clinic and request a CT scan, as it’s the only way to definitively diagnose a child with a suture fusion. The earlier the diagnosis, the more treatment options available. Early intervention is critical.
What is one piece of advice you would give to someone receiving a similar diagnosis for their child?
Know that we are so lucky in this country to have access to the best medical professionals and your child is in safe hands. Our surgeons are among the best in the world and research has come a long way. The journey will definitely be rough in parts and seeing your child in pain is going to hurt your heart deeply – but these little humans are resilient and brave and watching them tackle this challenge and come out the other end thriving, will make you so so proud.
Is there anything else you’d like to share?
Yes. Do not be afraid to reach out to other families and parents who have gone through this. There are groups out there that can connect you, do not underestimate the power of connection. It helped me immensely in the early days and I am still involved in these groups, but now with perspective and experience that can hopefully help others. The diagnosis and journey ahead feels daunting and navigating it on behalf of your child feels overwhelming, but know that we are so lucky to have access to the very best care, and you will eventually make it to the other side.
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