Max's story

Baby Max with a nasogastric tube, smiling
September 13, 2022

Max is a happy, smiley baby, facing some big challenges ahead. He was born at King Edward Memorial Hospital with a multicystic dysplastic kidney, a sacral dimple and a heart murmur. Eight days after he went home to Esperance, he was back in the Esperance Hospital Emergency Department, struggling to breathe and feed.

He was transferred via the Newborn Emergency Transport Service WA and the Royal Flying Doctors Service to Perth Children’s Hospital where he needed help breathing and eating. Fortunately, he started to get better after some antibiotics and a feeding tube, but other tests revealed that Max had two holes in his heart, his multicystic kidney had no function, problems with his bladder and spine.

At one month old, Max was diagnosed with a rare chromosomal disorder that has means he has extra pieces of chromosomes and some missing parts of chromosomes. One of these duplications is known as Chromosome 20p duplication and this includes problems with the heart, kidneys, craniofacial structure and intellectual and developmental delays.

“We won’t know how Max will be affected by this in the future, but we know he will be relying on PCH services for a long time to come.” says Max’s mum, Tanya. “PCH has gone out of their way to help us organise appointments, especially being a rural family from Esperance.” Being a future frequent flyer with us, Max’s family has been linked with Care Connect for Kids, which has helped consolidate Max’s care across all his medical teams.

Max has had a big start to life but has already surprised everyone at his one-month check-up when his family found out the holes in his heart have started to heal. The cardiologists are optimistic he won’t need heart surgery.

While the future for Max is not yet certain with such a rare disorder, for now his mum Tanya says, “he’s such a happy baby with a contagious smile.”

Baby Max at birth  Baby Max being held in hospital  Big sister Daisy and Max