Isaac fought for his first breath with the assistance of Neonatal ICU doctors and nurses as well as in the special care nursery to regulate his own blood sugar. Born on a Thursday and discharged from the Townsville University Hospital on the Saturday, my partner Clayton and I cried tears of relief on our way to unite our family with our then five-year-old daughter Charlotte. Isaac’s ordeal was over! Little did we know it was just beginning…

Weeks passed with little to no weight gain despite my best efforts and our amazing midwife Teena’s wisdom. Almost out of ideas and mentally exhausted we received a phone call informing us that Isaac’s heel prick test had shown one Cystic Fibrosis (CF) gene mutation. Entering into Isaac’s life at this point is nurse extraordinaire Leigh and the amazing Paediatric and Respiratory physician Ramaa Puvvadi at the Townsville University Hospital. It is with their perseverance for answers that Isaac was diagnosed. 

Cystic Fibrosis is a serious genetic condition that causes severe damage to the respiratory and digestive systems. With the help from Isaac’s great dietician Amy and physiotherapist Danni, Clayton and I developed a medication, diet and physio regime and, while we were still grieving for what Isaac’s life should have been, we moved on with our little CF warrior. 

At the age of four months I asked that Isaac have a chest X-ray as a baseline for future X-rays. Although this is not common practice, the team granted my request and when reviewed it displayed significant lung collapse in the upper right lobe of his lungs even though he showed no symptoms. He commenced antibiotics and Dr Puvvadi asked that Isaac have a head CT as she was also concerned about the shape of the front of his head. A couple of days later we received the devastating news that he had craniosynostosis of the metopic suture. Once again Clayton and I found ourselves in the same car park crying, but not for joy this time. 

As a registered nurse, I knew that this diagnosis and the severity of the synostosis most likely meant surgery to allow room for the brain to grow. Not long after this diagnosis, we received yet more terrible news: the antibiotics failed to improve Isaac’s collapsed lung and he needed to be admitted for a bronchoscopy and a two-week hospital admission for IV antibiotics and physiotherapy, with expected discharge on Christmas Eve. It was during this time we met with a Townsville neurosurgeon and told that Townsville does not have the multidisciplinary team required to perform this complex surgery. After copious research, I came across the Adelaide Craniofacial Unit and Dr Benjamin Grave.

After talking to Dr Grave I knew we had chosen the right place and people for his surgery. We had found our team that we were confident in.

Our next battle was money and we knew that the two trips we needed to make to Adelaide for Isaac were going to be expensive. Fortunately, Craniofacial Australia was able to assist us financially, as well as contributions made by my fantastic extended family and friends. The staff at the Foundation were kind and caring, and knowing we had their support allowed us to focus on what really mattered: Isaac’s surgery and recovery. Although the doctors informed us of what to expect in regards to Isaac’s appearance and behaviour post-operatively, it does not prepare you for the confronting reality. His eyes swollen shut and unable to see what was happening, his head bandaged firmly, IV lines as well as invasive monitoring made Isaac look like an entirely different baby.

As the days went by and the pain infusions lowered, our Isaac’s beautiful happy personality began to re-emerge and our little cranio-warrior, despite still not being able to see for a few more days, was going to be OK.

Clayton and I will always be grateful for the assistance Craniofacial Australia gave us. We would also like to thank the amazing staff at the WCH, the doctors involved in Isaac’s care, my parents and family for their support, not just for us but especially for our daughter who had to stay in Townsville. 

We cannot understate the relief the Foundation was able to give us by alleviating the stress of finances and giving us peace of mind. It has also allowed me to stay home with Isaac and help him through his recovery instead of returning immediately to work. By sharing our story we hope to raise funds so the next family can be supported in their time of need. We know how much of a difference your donation will make to a family, just like it did mine.

Warmest wishes,

Isaac’s mother, Andrea