“I had never heard of Craniosynostosis before.” 

-     Mum Natalie

Weeks after second son Benji was born, Natalie’s world went into a spin. After being admitted to hospital for an unrelated virus, a paediatric doctor observed Benji’s head shape and referred him to a specialist team at the hospital.

At the time, his parents believed that his head would ‘round out’ in time and that the bulges were the result of a complicated delivery. After all, that’s what their neonatal team had told them. 

Fast forward a couple of weeks, mum Natalie sat anxiously at the hospital awaiting Benji’s specialist appointment.

“I walked into a room full of specialists, and my heart sank. This must be something bad” Natalie recalls. “After trying to understand and absorb all the medical terminology being thrown at me, I walked out heartbroken, scared, and with so many questions. No parent ever wants to hear that their precious baby will require surgery on their skull!”

Benji had a CT scan followed by another appointment which confirmed his diagnosis - Sagittal Craniosynostosis. Two very long words, that would lead the family down a path of emotional turmoil and big unknowns.

The lead up to Benji’s operation was draining, with ‘what if’s’ causing huge stress and worry. Natalie explains that they were lucky to have the love and support of family and friends, helping them to stay as strong as they could”. 

Benji had his surgery at three and a half months old. The first 24 hours post-surgery were tough, but then Benji bounced back and was smiling, feeding and rebuilding his strength within days. 

Unfortunately, Benji experienced some unpreventable complications and his springs needed to be removed in a second surgery just 5 weeks after his initial operation (and much earlier than the ideal timeframe for this type of treatment). 

Mum Natalie says, “The months between then and now have been a whirlwind of ups and downs. When you see your child in pain, and endure months on end with still so many unknowns, there are no words for the heartbreak that you feel as a parent. Not a day goes by that we don’t think about what the future holds for Benji, in equal parts fear and hope.

"As we approach Benji’s first birthday, we still don’t know exactly what’s next - but we know that whatever happens, he will conquer any challenges that come his way and continue to be the shining light in our lives. We are so proud of him. 

"I am incredibly grateful for the kindness I have received and friendships made with other mothers going through similar experiences. 

We not only share a mutual story, but also the ability to support each other along the way. 

"Thank you for creating awareness and sharing our stories. Knowing we are not alone in this difficult journey has made an incredible difference, especially the days where the hardships seem greater than the triumphs. 

"To everyone on this shared path, I wish you a courageous and resilient journey ahead. To our little cranio warriors, you’ve got this."

THANK YOU NATALIE, BENJI & FAMILY FOR CONTRIBUTING AND SUPPORTING OUR MISSION TO CREATE AWARENESS THIS CLEFT & CRANIOFACIAL AWARENESS MONTH