Small act to brighten life as Aussie boy faces fourth open heart surgery

Congenital heart disease is the most common congenital disorder in newborns and a major killer of Aussie kids.

At just seven years old, Canberra boy Charlie Clode has spent more time in hospital than any of us would hope to endure in a lifetime.

"We weren’t promised good things when he was born," mum Melissa tells Yahoo News Australia. "His life so far has been a pretty awesome journey." But it's one spent shuttling back and forth between the family home, Canberra Hospital and Children's Hospital Westmead in Sydney where Charlie will undergo his fourth open heart surgery in a little over a week – the ninth total heart operation of his young life.

"He was born without the right connection between the heart and lungs, and a genetic condition," Melissa says.

As the doctors would put it, he lives with a congenital heart disease including pulmonary atresia, an overriding aorta, other complicated heart defects, and a genetic anomaly known as VCFS (velocardiofacial syndrome).

Canberra boy Charlie has faced a lifetime of medical treatments.
Canberra boy Charlie has faced a lifetime of medical treatments. Source: Facebook

As a result, the family knows they are never far away from their next hospital stint, an inevitability that Melissa tries her best to make as "homely" as possible by adding a touch of Charlie to his hospital bed with homemade sheets, bed brighteners and other personalised comforts.

It's a small thing but it makes a big difference, she says.

"At Children's Hospital Westmead we have a bunch of great nurses that are almost like family who make sure the kids on the ward, who are often there for a long period of time and are far away from their homes, have beds that are a little less clinical than a normal hospital bed," she says.

And it's something the public can do to help, with the mum putting a call out on behalf of nurses at the children's hospital.

Call to donate bed brighteners for kid's heart ward

The nurse unit manager at the heart ward Charlie visits at Westmead recently asked Melissa to put a call out for bed brighteners, particularly for older kids on the ward to help brighten their stay.

"They are running super low because they keep finding their way to peoples' home beds and on to other wards," the Canberra mum wrote in a private Facebook group where she shares updates on Charlie's journey. "Which is totally fine because they are still sharing their love", but it means the hospital could always do with more.

"They get used over and over and over again until they are threadbare and are washed by our wonderful ward volunteers."

The bed brighteners can often take on a powerful nostalgic presence
The bed brighteners can often take on a powerful nostalgic presence. Source: Facebook

A bed brighter is a piece of cotton or flannelette fabric that is hemmed, ideally about one metre by 1.2 metres. "Hemming can be as basic as doing the top and bottom and leaving the selvage. Pretty much like a half-sized single flat sheet or a really big baby wrap," Melissa explained.

Anyone wishing to donate or craft their own can send them addressed to the nurse unit manager at Edgar Stephens ward, at the Children’s Hospital at Westmead.

"It makes for a more homely environment, it means that the kids can feel a little less like they are in hospital and a little more like they're having a childhood," Melissa told Yahoo, saying they often take on outsized emotional importance for families of the young patients.

"We've become quite attached to them too. I remember particular bed brighteners from particular surgeries that Charlie has had."

Congenital heart disease a major killer for Aussie kids

Congenital heart disease is the most common congenital disorder in newborns, according to HeartKids, an Australian not-for-profit which advocates for those impacted by childhood heart disease.

It's one of the biggest killers of Aussie children under the age of one with as many as 2,400 to 3,000 babies born each year with some form of congenital heart disease. Each week four will die, The Canberra Times reported recently.

But despite all he has been through, Charlie continues to fight. "He'll always need various, different heart interventions but he's definitely needed a lot less as he's gotten older. He's a very strong little boy who has defeated some pretty difficult stuff in the past. He's had a couple of strokes and he has epilepsy and brain damage as a result of those.

"He's a gorgeous, gregarious, happy little boy who's got a big will for life."

Charlie has a 'special relationship' with his dog Elton, his mum says.
Charlie has a 'special relationship' with his dog Elton, his mum says. Source: Facebook

His upcoming surgery on May 1 hopes to fix a problem with his right ventricle and comes with a long list of risks. "His little heart is very, very fragile at the moment," his mum says.

The family don't know how long this next hospital stay will be, but the best case scenario is a couple of weeks. "We're prepared for whatever we get dealt."

Ultimately he's under palliative care. "Here's here for a good time," she says, leaving the next bit unspoken.

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