Sagittal Craniosynostosis
Harry's Story
Harry's Mum Katie tells their story...
Our beautiful Harry boy was diagnosed with Sagittal Craniosynostosis at 6 months of age.
At his 4-month immunisations, it was flagged by our Maternal Health Nurse that
his head circumference had grown beyond the bell curve of expected growth (it was in the 97th percentile throughout pregnancy).
Though he was meeting all of his expected milestones, protocol was referral to a paediatrician. She felt it was a precaution but wanted to be safe. Similarly to the nurse, the paediatrician noted that Harry was meeting his milestones but wanted to rule out any “scary stuff” as he was mindful that Harry’s head was large and oddly shaped (long rather than round). We were then sent for an ultrasound to check for any fluid around his brain, ruling out Hydrocephalus.
A referral to hospital then followed, there we met with the plastics team for a Craniofacial Consult. We were greeted by a team of 5 surgeons who told us of Harry’s diagnosis within minutes of entering the room and their recommendation for a Cranial Vault Remodel (CVR). To us, we had a perfect baby and surgery seemed so drastic but we trusted the team and knew that despite our worries, this is what will be best for our cheeky boy.
From this initial consult, the team have been nothing short of amazing and there are no words to describe how thankful we are to have had our beautiful Harry in such safe, knowledgeable hands.
We are forever grateful for the beautiful families we have connected with through Harry’s diagnosis, the hospital team and Craniofacial Australia, and we will continue to do our part to help other families who face the same challenge. Prior to Harry’s diagnosis, we had never heard of Sagittal Craniosynostosis, but we will proudly tell our boys’ story and help other families on a similar journey.
His CVR was completed on June 11th 2025, and we are now home, ready for our boy to heal. We wish this wasn’t an obstacle he needed to overcome so young, but thankful he won’t remember such a big surgery and I know he will smash his recovery and continue to amaze us as the Cranio-Warrior he is. 🩵
Thank you to Harry's Mum Katie for sharing
their story.
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