Originally published in the Herald Sun, 20 March 2021
Words: Brigid O’Connell
Photo: David Caird

Little Harry should be critically ill but he has recovered just as fast as a rare condition took hold of his kidneys thanks to a life-saving drug and top-class medical system.

The blood test results defied what doctors saw in front of them. On paper, Harry Warnock should be critically ill with such a low blood count.

But as fast as the rare condition took hold of the then four-month-old’s kidneys, he recovered just as quickly thanks to a life-saving drug and top-class medical system that joined its links across the state to help him.

Harry had always been a pale baby. Mum Lisa Warnock said it wasn’t until he started refusing feeds and sleeping all day her gut told her something wasn’t right. Harry was sent straight from hospital in Benalla to Wangaratta.

With the results of his blood tests, the paediatrician there called The Royal Children’s Hospital paediatric nephrologist Tom Forbes for advice.

“He was profoundly anaemic. Numbers for any other child, if they happened acutely, you’d say they’d be life-threatening,” Dr Forbes said.

PIPER, the Paediatric Infant Perinatal Emergency Retrieval team, was summoned to fly Harry to Melbourne. Tests confirmed he had a rare abnormality of his immune and blood-clotting system, called haemolytic uraemic syndrome, which causes blood clots to form in vessels of the kidneys.

Dr Forbes said they got special approval from the Pharmaceutical Benefit Scheme to treat Harry with a life-saving drug called eculizumab, which he will need every few weeks for the rest of his life.

He has also undergone genetic testing through the Kidney Flagship program, its establishment funded by the Good Friday Appeal, to use genetic testing to improve and ­personalise the treatment of kidney disease.

“The control of the disease and recovery we’ve seen in Harrison is just astounding. He’s essentially back to normal,” Dr Forbes said.

“This story speaks to the great collaboration we have between the Children’s and regional centres, the retrieval service, the application we made for this very expensive drug, and the genetic service that launched a rapid investigation. It pulls together a lot of the strengths we have for paediatric care in Victoria.”

Now home and eight months old, Harry still has an IV line in his chest for ­ongoing infusions.

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