Just three hours after welcoming her new son into the world, Jaxon’s mum, Stacey, could feel her worst fears creeping in: something was wrong with her baby. 

There had been no warning signs. Jaxon had arrived full-term after a healthy pregnancy and an uncomplicated birth. But as Stacey held her newborn son, she knew something wasn’t right. He wasn’t interested in feeding, he struggled to wake up from sleep, and she could sense that he was unwell.  

“Compared to my first pregnancy, Jaxon was never hungry. My daughter, Lilly was hungry about two to three hours after she was fed. However, with Jaxon, he fed and then he would be very lethargic,” Stacey shared. 

As a former veterinary nurse, Stacey was used to noticing signs of medical distress in animals but combined with her maternal instinct, she recognised that something was seriously wrong with her little boy. The moment Jaxon’s vomit turned bile green during his second feed, Stacey knew he needed immediate medical attention.  

“As soon as I’d seen that it was bilious vomit. I knew that there was a problem and that it was bowel related,” she continued.  

Trusting her instincts, Stacey acted immediately. Having only just given birth, she was determined to get answers while she and Jaxon were still in hospital. She raised her concerns with doctors in their local hospital in Wodonga, who searched for answers. But instead of providing certainty, the initial assessment brought more questions, with clinicians making the decision to transfer Jaxon to The Royal Children’s Hospital (RCH).

At less than two days old, Jaxon was transported from their home in Wodonga to the RCH via PIPER – the Paediatric Infant Perinatal Emergency Retrieval service. PIPER is a vital, state-wide service, with philanthropically-funded equipment, that transfers sick babies like Jaxon from hospitals and homes across Victoria.

Once at the RCH, Jaxon was immediately admitted to the neonatal intensive care unit (NICU). Away from home and just two days post-partum, Stacey could not help but feel overwhelmed and isolated. 

“When we arrived at the RCH, we were met with a room full of doctors and nurses. It was very daunting,” Stacey said. 

Before Jaxon’s transfer, doctors in Wodonga had raised the possibility that he could have Hirschsprung’s disease, a rare condition where nerve cells are missing from part of the bowel. Until then, Stacey had never heard of the condition and had no idea what this could mean for her newborn son’s future. She began researching Hirschsprung’s disease and quickly became convinced that it was the cause of Jaxon’s symptoms.  

“I started researching Hirschsprung’s and thought, ‘Oh this was what Jaxon has.’ So, while the diagnosis was a huge shock, I already suspected what it was and knew what the next steps would be,” Stacey said.   

At the RCH, biopsies confirmed that Jaxon did in fact have Hirschsprung’s disease but still, doctors needed to determine how much of his bowel had been affected. This led to two long and uncertain months in hospital, a diagnosis that confirmed a long stretch of affected bowel, and surgery to form a stoma when Jaxon was just three weeks old. 

Sadly, Jaxon then faced ongoing complications, including high fluid losses and skin damage around his stoma. This meant frequent hospital admissions and long periods away from the family’s regional home, some admissions even stretching beyond six weeks. For any patient, that is a long and difficult time in hospital, but for a child not yet two years old, it meant much of Jaxon’s young life was spent surrounded by hospital walls rather than the comforts of home, family and friends. 

Jaxon then underwent a life-changing surgery to remove the affected section of his bowel, reconnecting his intestine and reversing his stoma. For Jaxon, this procedure has meant the possibility of less time in hospital, more time with family and friends, and the opportunity to experience a normal childhood.  

The first two years of Jaxon’s life were far from what Stacey had imagined – filled with medical appointments, long hospital stays, and countless challenges. But throughout the many upheavals, Stacey credits the RCH for not only caring for Jaxon but supporting her and their entire family, ensuring they were well supported and never felt alone. 

Jaxon at home

“Everyone who we have been in contact with has been immensely helpful through every step of the way. If I had any questions, they were always there to answer. It’s a very open, honest space. The RCH is the reason my son is alive, and I couldn’t be more thankful,” Stacey emphasised.

Today, Jaxon is enjoying childhood like any other toddler his age – happy, energetic, loves being outdoors, and looking forward to celebrating his birthday in October.