Darcy's Story | Craniofacial Australia

Sagittal Craniosynostosis

Ava's Story

Ava, now 2, was diagnosed at birth with Sagittal Craniosynostosis after nurses noted unusual ridging along her head. She was seen to promptly by the craniofacial unit.

With a 50% chance that it would resolve, the family were asked to come back in a few months time. In that time, there was no change to her head shape.

A CT scan then led to a Cranial Vault Remodelling (CVR) being scheduled between the age of 11 to 13 months old.

Mum Amy says "So the wait began. There was a backlog in surgeries at RCH due to COVID. The waiting time was pushed out to 13-15 months. That didn't sit well with us, so we decided to get a second opinion from the Women's and Children hospital in Adelaide. After meeting with both teams, the hardest decision was where to get the surgery done - travel interstate for surgery at 9 months old or wait that extra time and be closer to home and our support system in Melbourne".

The family decided to stick with their local hospital and in March 2023, with 5 days notice, Ava had her CVR surgery.

"There were so many emotions that day, nothing can prepare you for handing over your little one for surgery but we knew she was in the best of hands".

The surgery went smoothly and after a 4-day stay, the family went home. Ava recovered well, until swelling became apparent on her scar line. A few days later, the wound starting oozing. Ava had an infection.

2 additional surgeries were scheduled to clean the wound, antibiotics and a longer hospital stay was needed but they were well looked after.

15 months post surgeries, the family set off on a well-earned adventure travelling Australia!

"You can't even tell Ava has had major surgery on her skull. Its only when you look back on photos that you can see the difference. Our advice to anyone who is waiting on a diagnosis or surgery, yes it is a long wait and an anxious time but don't let it consume you. Make the most of your time watching your little one grow. And don't be afraid to get 2nd opinions"

Thank you James, Amy and Ava for bravely sharing your story of hope for others.