New model of care changes Niamh's life

When 18-year-old Niamh was diagnosed with a rare life-threatening form of invasive fungal sinusitis, she faced a future filled with surgeries and long stays in hospital, but a new model of care has helped to change that.

Earlier this year, Niamh developed a fever, severe sinus pain, and a bloody nose. An MRI soon confirmed Niamh had invasive fungal sinusitis and would need urgent surgery to survive. 

After undergoing several major surgeries, Niamh slowly began to recover but her journey was far from over. To ensure the infection didn’t return, Niamh would need multiple follow up procedures. To her and her family’s relief, these could be performed through the newly introduced Endo Suite. 

The Endo Suite is a new model of care and forms the first part of the Base of Skull Service (BOSS) at Sydney Children’s Hospital, Randwick – set to be the first integrated paediatric multidisciplinary Skull Base unit in the southern hemisphere. 

Through the Endo Suite, Niamh’s highly trained specialist and multidisciplinary team are able use an endoscope and specialist equipment to remove the infected tissue through Niamh’s nasal passage, without putting Niamh under general anaesthetic (GA) or needing to make direct incisions into her skull.  

Dr Catherine Banks, Ear, Nose and Throat Surgeon at Sydney Children’s Hospital, Randwick, says the minimally invasive model of care is a game changer. 

“Traditionally, sinus surgery for children and young people like Niamh can involve extensive equipment set up, operative time, multiple prolonged general anaesthetic and long hospital stays, however this model of care avoids that,” Dr Banks said. 

The new system permits a quick “in and out” approach for patients, enabling them to return to their daily lives with minimal disruption. 

“What we've done is we've come up with a middle ground where the kids come in in their normal clothes, they get put off to sleep without having to have a general anaesthetic and we can clean out their nose with no discomfort or pain.”

“These patients wake up feeling good with no real memory of the procedure and can go back to school in the afternoon.”

Niamh’s Mum Lynette says having the Endo Suite as an option has been incredible and has made a huge difference to her daughter’s recovery.  

“The first time Niamh had the Endo Suite procedure done, I went for a walk to go and pay for my parking ticket and by the time I got back the surgery was over and Niamh was already awake and in recovery,” Lynette said.

“It’s really encouraging for mebecause I know Niamh isn’t in pain, she doesn’t have to go under GA or have a breathing tube and I'm not sitting there waiting for her to wake up not knowing how she will be feeling.  Niamh also now knows these procedures are quick and painless so has no anxiety about needing more in the future.”

For Niamh, the fungi has now been completely removed from her nasal passage and while she still requires several more surgeries through Endo Suite as a precaution, Niamh is feeling better than ever. 

"I just really would like to thank Dr Banks and her team. They truly saved my daughter's life, and there are no words to convey how much that means to me and her extended family,” Lynette said.

The BOSS is being proudly supported by Sydney Children’s Hospitals Foundation and once it launches, will also be able to offer minimally invasive surgical options for children with trauma and tumours in and around the base of skull.