Harmony born with rare condition

HARMONY was less than a day old when she was rushed to the Royal Children’s Hospital for heart surgery.

Erin Hurley and Adrian Billings with their daughter Harmony who was born with omphalocele.

Erin Hurley and Adrian Billings with their daughter Harmony who was born with omphalocele.

Now just over a month old, she is bravely fighting for survival after being born with a omphalocele, where organs grow outside the abdominal wall in a sack. The rare condition affects one in 100,000.

She has also been diagnosed with a condition called a pentalogy of cantrell — a cluster of five specific defects involving the diaphragm, abdominal wall/omphalocele, pericardium, heart and lower sternum.

Friends and family are now rallying to support parents Adrian Billings and Erin Hurley so they can both remain in Melbourne as Harmony undergoes life-saving surgery. It’s expected Harmony will have to spend at least three months in hospital while specialists try to place several organs back inside her tiny body. 

Friend Elise Willie said the aim was to help Mr Billings to be in Melbourne with Ms Hurley and Harmony. “We want to help him get up there. 

“The baby was rushed into surgery as soon as she was born. They didn’t even get to hold her.

“Initially they thought it was only her liver.” But after a planned caesarean, doctors soon found the omphalocele included her intestines. A tear above the omphalocele required immediate heart surgery the day Harmony was born. 

The infant’s treatment will be slow and complicated, involving a procedure to paint a solution around the omphalocele that encourages the skin to grow over it, often referred to as paint and wait. It’s hoped the omphalocele will then reduce in size, compressing the organs into their proper place inside the body. The process could take at least three months, while Harmony will have to remain close to the hospital for six months for regular check ups. 

Ms Willie said the fund-raising efforts so far had been simple but effective — a Facebook page and a sausage sizzle.

Mr Billings said it had been a testing journey so far. “She’s been in the Royal Children’s since she was born on the 27th of June,” he said. “It’s been difficult because everything is constantly changing. It’s a like a roller coaster all the time.”

Those wanting to support the family can find details by searching for Helping Harmony Warrnambool on Facebook.

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