Elsie's Story

Elsie Cox is a happy little girl, meeting all of her developmental milestones—something her parents Hannah and Simon could barely have imagined at their 12-week scan, when they learned Elsie had a rare and complex condition called an Omphalocele.

“Everything was so small on the scan, but they could tell Elsie’s organs were growing outside her body, in the umbilical cord,” Hannah said.

Omphalocele is a birth defect where the baby’s intestines, liver or other organs grow outside the body. It affects one in 4,200 live births, however giant ones like Elsie’s are much rarer—one in five babies won’t survive.

Elsie’s was one of the largest Omphaloceles ever treated in Queensland.

“One moment you’re so excited, and the next you’re trying to process what’s happening… this condition that my baby had, may not be compatible with life...that was hard to hear,” Hannah said.

Throughout the next five months, the Sunshine Coast couple travelled back and forth to Mater Mothers’ Hospital—never knowing what to expect as their baby grew bigger. Hannah and Simon were naturally anxious about what Elsie’s birth, and what her future may hold.

At her birth, a specialised team of more than 10 clinicians performed the incredibly delicate caesarean section, taking the utmost care not to put any pressure on her abdomen or umbilical cord.

Despite weighing a healthy 2.56 kg, Elsie was too sick for the team to attempt even a partial closure of her abdomen, which meant starting the very long process of growing skin over her abdomen instead. She will eventually require surgery down the track to finish the closure.

“During our journey we learnt how much work Mater Research was doing in this space. It was such a blessing, knowing that Elsie had the best possible chance to survive,” Hannah said.

When you buy tickets in Mater Prize Home, you are helping to support vital medical research and exceptional patient care, bringing hope and healing to patients like Elsie. Thank you.

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