Four-year-old Roman’s life changed forever in 2018 when what was first thought to be a common cold ended in a diagnosis of Granulomatosis with polyangiitis, a rare life-threatening disorder that causes inflammation of the blood vessels in the nose, sinuses, airways, lungs and kidneys. The inflammation narrows the airways and slows blood flow to the organs. Early diagnosis and treatment can lead to a full recovery, but without treatment the condition can be fatal.
‘Things escalated very quickly,” recalls Roman’s mother Lana. “What started as symptoms of a cold, like a croupy cough, noisy breathing, crusting around the nose and a rash four days earlier had worsened to severe breathing difficulty, so I called a home doctor.
“Within minutes of the doctor arriving he said to call an ambulance. Roman’s oxygen levels dropped significantly on the way to hospital and he needed an injection of adrenaline to open his airways which were dangerously narrowed. His body wasn’t responding to the adrenaline, so he had to be given more than usual.
“There was a point during the ride to hospital that the paramedics thought Roman may not make it.”
Fortunately, Roman did make it to hospital and was transferred immediately to the operating theatre to be intubated (have a tube inserted into his airway to help him breathe).
Following his surgery, Roman spent seven days on life support in the Queensland Children’s Hospital’s intensive care unit and it was there that he was diagnosed with Granulomatosis with polyangiitis, an extremely rare autoimmune condition that affects only one in a million children. If left untreated, 90 per cent of undiagnosed children experience life-threatening complications.
After a week in the intensive care unit, Roman’s condition had improved, and he was moved to a ward where he spent two weeks before being discharged home.
However, only a couple of days after being back at home, Roman had serious breathing troubles again and his family rushed him to the Queensland Children’s Hospital emergency department. He was sent to the operating theatres once again to dilate his airways.
So far in his short life, Roman has gone into surgery for his airways seven times and it’s likely that he will need more surgery in the future. Roman now comes to the Queensland Children’s Hospital for intravenous immunosuppressants every six months to stop his immune system attacking his blood vessels and his airway. He also takes daily medication to manage his condition.
Lana said that despite the challenges Roman has faced in the past two years, he is now doing well.
“He is very self-aware and knows his physical limitations,” Lana said.
“Roman has had an excellent response to treatment so far and his future is bright. He is now a well and happy little four-year-old boy.”