Jacob's Story


"I was born at 26 weeks gestation and weighed 590 grams in October 2005 and spent just over 3 months in hospital before coming home.


Due to being born so early, I was in the care of Neonatal Intensive Care Unit, Special Care Baby Unit on tube feeds, oxygen and special care facilities to keep me alive. While in there I had a visit from Professor David David due to my head becoming flat and growing at an odd shape.


This is the start of my journey with Professor David and the Craniofacial team. I was born with Craniosynostosis (fused growth plates). My first head advancement began at the age of 1 and a second advancement after that due to not having enough room for my brain to grow. Professor David made my forehead nice and smooth but I head butted the floor and cracked the bone and undone all of Professor David’s good work.  


I still got pressure in my head (hydrocephalus) so a VP shunt was put in to drain out the fluid from my head into my tummy. Too much fluid drained out too quickly, the bones fused and now I have lots of bumps and indents on the top of my head. Lucky, I have lots of hair now and most of it is covered.

It has been a very challenging journey, I have spent a lot of time in and out of hospital, was on a feeding tube and home oxygen for some time, developmental delays, hearing impairment, other medical issues and learning difficulties. Due to lots of physiotherapy, speech and occupational therapy I have overcome lots of obstacles in my life to date and continuing.


From an early age, I enjoyed tapping, banging on my mum’s plastic containers, pots and pans, anything I could get my hands on! It didn’t matter where I was – shops, outside, on a gate, anything I could hit with my hands, kitchen utensils and sticks. Yes, I am a drummer! This is my passion! This is what I love to do. I do drumming lessons every week to learn new songs, techniques and making lots of noise. Through drumming I have met lots of artists in the music industry thanks to my drumming teacher. It’s been so awesome!. Variety SA had provided me with sponsorship for the Arts over the last 10 + years to help pursue my dreams and talent. I love performing in front of people, by myself or band and talking music to anyone who would listen. Love learning about musicians and their stories. My hobbies that I enjoy are fishing, drumming, listening to music of all sorts, walking and spending time with friends.


I am now 18 years old and I have been through so much medically and mentally. My advice is “You can do anything you want to do”. Follow your dreams and passion. "

"It wasn’t an easy process to see Jacob go through his journey with Craniofacial surgeries and what he had to endure. It was hard and to see the pain and suffering of what went on. We just put one foot in front of the other and got through. We had confidence the Craniofacial Team which have provided us with the best care possible.  Jacob has had the best people looking after him and as tough as it was we knew that Jacob was going to come out the other side healthy and able as he did."

- Mum & Dad Steve and Karin

THANK YOU TO JACOB AND HIS FAMILY FOR BEING A VOICE OF HOPE AND STRENGTH FOR THE CRANIOFACIAL COMMUNITY

Read more Cranio-Warrior Stories here...
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