Where there's a Wil, there's a way to beat a rare respiratory condition

Breathing better ... Melissa Schneider with son Wil, who is now able to return home.
Breathing better ... Melissa Schneider with son Wil, who is now able to return home. Photo: Joe Armao

It has been a long journey fraught with complications, but 14-month-old Wil Schneider is finally on his way home.

He was born in an emergency caesarean on June 22 last year after developing the serious condition foetal hydrops, which causes fluid to build up in the chest and abdomen. Born early at 31 weeks, Wil struggled to breathe, and spent four months in neonatal intensive care.

There were a few weeks at home with mum Melissa, dad Adrian and three-year-old sister Aubrey, but then Wil's condition deteriorated again, necessitating a further four months in paediatric intensive care.

In a measure of his fragile hold on life, Wil was baptised in the neonatal intensive care unit and referred to palliative care only a few months ago.

Monash Children's Hospital head of respiratory medicine Dr David Armstrong said doctors first thought Wil's breathing difficulties were the result of reflux. They took a lung biopsy, which Dr Armstrong sent to London, but clinicians there were left scratching their heads.

But at six months of age, Wil was finally diagnosed with pulmonary interstitial glycogenosis, a condition that has only been confirmed in a handful of children worldwide. The condition has impaired the development of his lungs, but they've since been strengthened with steroid treatment. 

And yesterday, after two operations, Wil was off home, having spent all but a few weeks of his life in hospital.

Wil's mum said hospital life had come to feel normal, with staff tracking Wil's weight on a large poster fixed on a wall of his room and Aubrey racing around the paediatric ward in a plastic car.

But now, and after a total of eight months in neonatal and paediatric intensive care, and despite needing monthly steroid treatments for the next three months, Dr Armstrong said Wil's outlook was excellent.

And what are the family looking forward to? "Maybe soon being able to go on holiday or for a weekend away," Mrs Schneider said. "[But] even being at home will feel like a holiday."