2 weeks Ago By Damon Cronshaw
Azalea Rowe's incredible will to survive has amazed doctors and her family. Login or signup to continue reading The 8-year-old, of Adamstown Heights, was born with her liver, bowel, gallbladder and stomach outside her body, covered only by a thin sac. She will undergo her second major surgery next month.
Her aunt Katie Broadhurst started a GoFundMe, titled " Azalea's Brave Battle : Support for Surgery and Recovery". "She is the most resilient little girl," Mrs Broadhurst said. Parents Clare and Dane Rowe were told about Azalea's condition during pregnancy, which doctors believed was "not compatible with life".
"She's been such a fighter from the get-go," Mrs Broadhurst said. "There are days when it's really hard for her. Recently finding out she needs surgery again has been difficult.
" Azalea was born with a rare condition called Pentalogy of Cantrell, which causes a combination of defects. The condition affected her abdominal wall and caused a hole in her heart, diminished lung capacity and a cleft sternum. In her early life, she spent nine weeks in John Hunter Children's Hospital, including six weeks in NICU ( neonatal intensive care unit ).
She then spent a further nine months receiving care through a "hospital in the home" program. For years, Azalea wore a brace to protect her fragile abdomen. But last year, she had an abdominal wall reconstruction.
"She has amazed us with her recovery," Mrs Broadhurst said. However, pain due to gallstones and frequent bouts of pancreatitis and liver inflammation led to keyhole surgery in August. The problems continued, so her medical team decided to separate her two bile ducts.
Three surgeons will do the complex operation at Westmead Children's Hospital in early December. "It's very scary, but we're so appreciative of the specialists available to her," Mrs Broadhurst said. "Everyone in the family has all those feelings around this little tiny girl going back in for surgery.
"We take each day as it comes. We have to get through it, so hopefully she can live a relatively normal life." She will face a lengthy stay and recovery at Westmead.
While Azalea receives NDIS funding for cerebral palsy and autism and she's had great care in the public system, not all expenses are covered. Mr and Mrs Rowe have had to take unpaid leave to stay by their daughter's side during hospitalisations. Azalea has two siblings, Shelby and Hughey, aged five and one.
"We have periods where we're apart from them longer than we'd like and longer than they'd like too," Mrs Rowe said. "When Azalea had her major surgery last year, Hughey was only just learning to sit up. "And Shelby, my youngest daughter, was having a lot of separation anxiety and getting ready to start big school.
"That's a hard time for any little kid, even without the extra things to worry about." Mrs Rowe said Azalea's health challenges "impact everyone who cares about her and wants her to feel better". "It's been hard for family, friends and anyone close to deal with these things," she said.
Mrs Rowe said her family had "been reluctant to seek help". "We've spent a lot of time over the last eight years trying to advocate and raise awareness of rare conditions and help affected families," she said. "We always want to be independent, but sometimes we have to admit that we need help too and that's OK.
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