When Billy was born, the midwife made a comment about Billy having quite a large head. At the time we thought nothing of it. Following his birth we had all the checks – the paediatrician, GP appointment, midwife check and everyone said the same thing ‘just keep an eye on his head shape’, as it was quite long. At Billy’s 4 week community health home visit, the nurse held Billy and commented on his long head shape. She then felt his skull and told us that she noticed a ridge in the centre of his head and a small fontanelle (soft spot) where there should be a large one.
The next few days, weeks and months were an absolute blur.
We booked into the GP the next day, by the following Monday we had a paediatrician appointment, followed by a referral to the Queensland Children’s Hospital in Brisbane. After a CT at the Children’s Hospital confirming Billy had Sagittal Craniosynostosis, he was booked in to have surgery at just 3 months old. As Billy’s diagnosis was caught so early the plastic surgeon team told us he was a good candidate to have a spring-assisted cranioplasty. Using springs was less invasive than cranial vault remodelling, but meant he had to have two surgeries, one to insert the springs and one to remove them.
The care package we received from Craniofacial Australia was a welcome relief from the stress of Billy’s upcoming surgery. The check ins on the phone and financial support we received was a kindness that we were not expecting, and we feel an overwhelming gratitude to everyone at Craniofacial Australia.
Billy had the springs inserted in December. Sending him into surgery at 3 months old was a truly heartbreaking experience. The wait while he was in surgery was agonising. Seeing him in the ICU post-surgery was a mixture of relief and ongoing worry.
We spent a long night in the ICU for monitoring before we were put on the ward for two nights. Being brand new parents, faced with the challenge of caring for our baby post surgery was overwhelming. We were so lucky to have the strong support of our families around us. 2 months later, in February, Billy had the springs removed in a second, less invasive surgery. It was difficult to send him back in for a second surgery, but it was a relief knowing this was the final step.
We are so thankful to the plastics and neuro team at the Queensland’s Children’s Hospital. They took incredible care of Billy and have changed all of our lives.
“The support from our family and friends as well as Craniofacial Australia, got us through one of the hardest times of our lives.”
Billy is now almost 1 and he is the most amazing boy. He is braver than he will ever know and we could not be prouder of our little man.
Every craniofacial journey is unique – filled with challenges, triumphs and everything in between. Every face has a story to tell. By volunteering to tell yours, you’ll not only honour your own experience, but also give hope and encouragement to others walking a similar path. Whether you’re a parent, sibling or supporter, we’d like to hear from you. As a story volunteer, we will make sure that your story is told in a way that suits you.
