Everleigh’s Story

30 Nov 1999

Brooklyn’s pregnancy with her firstborn was picture perfect.  For months leading up to the birth, she prepared for her baby’s impending arrival and counted down the days until she was finally earthside. Everything was going to plan until shortly after Everleigh was born, the unimaginable happened – she stopped breathing.

Born at their local hospital in Dubbo, Everleigh’s beautiful delivery suddenly turned scary in the space of only a few minutes.  Doctors and nurses who filled the room, quickly whisked Everleigh away to try and resuscitate her but had difficulty due to her narrow airways. Throughout the madness, Brooklyn and her partner, Bailey, were only able to catch a few updates: Everleigh had a small chin, a cleft palate and her tongue was rolling back and blocking her airways. 

That night, Everleigh was flown to the Grace Centre for Newborn Intensive Care at The Children’s Hospital at Westmead. Brooklyn followed behind and was taken to the hospital next door to recover.

“It was so overwhelming. It was hard being away from her. I didn’t get discharged until she was two days old,” recalled Everleigh’s mum, Brooklyn

At just three-days-old, Everleigh had an emergency procedure where a camera was fed down her throat to investigate the cause of her narrow airway. After some further x-rays, scans and genetic testing, Everleigh was diagnosed with a rare medical condition called Pierre Robin Sequence (PRS).

PRS is a condition where babies are born with a small lower jaw, causing difficulties in breathing, often resulting in a cleft palate. When Brooklyn and Bailey heard the diagnosis they were distraught.

“We didn’t even know what it was. I remember when they first were throwing it around, we didn’t want there to be a name. We didn’t want it to be true,” said Brooklyn. 

Everleigh spent five weeks in the Grace Centre and underwent a jaw distraction surgery to help open up her airways. Everleigh continues to see the sleep team, cleft palate team, speech therapy and ears, nose and throat (ENT) specialists for ongoing check-ups to ensure her condition is properly managed. This will be a major part of Everleigh’s ongoing care for the next six years.  

“Everleigh’s really good now. We are on the ball at home and have different feeding techniques to help manage her condition. She is now off the CPAP machine and apnea monitor at night which is also really exciting” added Brooklyn.

Little Everleigh is not the first member of her family to receive life-saving care at The Children’s Hospital at Westmead. Over twenty years ago, Everleigh’s Uncle Jaxon underwent heart surgery after being diagnosed with a potentially life-threatening genetic condition called Marfan Syndrome. His story was featured in the Bandaged Bear Appeal for that year and thanks to the treatment he received, Jaxon made a full recovery and grew up to become a healthy adult.

Now, Jaxon is close with niece, Everleigh – and while she doesn’t know yet, he’s aware that he and she share the special bond of benefiting from the life-saving care they both experienced at The Children’s Hospital at Westmead.

It is thanks to the support of donors like you that kids like Jaxon and Everleigh have the chance to grow up into healthy adults and live long and happy lives – a donation to Bandaged Bear today really does last a lifetime.

Whether saving the life of Everleigh today, Jaxon 20 years ago, or a family member in generations to come, The Children’s Hospital at Westmead is there for sick kids, now and into the future.

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