Saving Aria's life

1 October 2023 | Expected time to read: 5 minutes

Newborn Aria in hospital

Amy was only 24 weeks pregnant when she was told she would need to deliver her baby. After suffering severe pre-eclampsia, it was the best option to save both of their lives

Her baby girl, Aria, was born weighing 493 grams, less than a bag of sugar, and was so small she could be held in the palm of one hand.

Aria was born with short gut syndrome, and without fully connected and working intestines. Her condition means that she is unable to absorb nutrients as quickly or well as a healthy baby. For Aria, this caused several complications, including dilated bowels and a distended stomach, making her more susceptible to bacterial overgrowth in her bowels.

At just six days old, Aria was transferred by the Newborn & paediatric Emergency Transport Service (NETS) from the family’s local hospital to The Children’s Hospital at Westmead’s (CHW) Grace Centre for Newborn Intensive Care, which provides highly specialised and personalised care for the state’s sickest babies.

Transferring a baby as little and fragile as Aria requires an incredibly skilled team and highly specialised equipment. The NETS team were able to provide this vital support to Aria and transfer her to CHW safely to get the specialist care she needed.

Thanks to the generosity of Sargent Pies Charitable Foundation, Sydney Children’s Hospitals Foundation was able to fund a specialised NETS ambulance like the one Aria used. Within twelve months of operation, the new ambulance travelled 27,774kms, making 245 retrieval missions throughout NSW.

“The NETS team were just amazing. They told us Aria was in the best hands possible and rang us as soon as they got to Westmead to let us know everything was ok. We can’t thank them enough,” Amy, Aria’s mum, said.

(Mum Amy nurses baby Aria with Dad Kalle in the Grace Centre).

(Mum Amy nurses baby Aria with Dad Kalle in the Grace Centre).

Aria had her first surgery at eight days old to connect her bowels together and was the smallest patient her surgeon, Dr Erik La Hei, Acting Head of Burns and Staff Specialist at CHW had operated on in 20 years. Aria spent the next two months in the Grace Centre, before being moved to the Clancy Ward to continue her recovery.

Throughout Aria’s journey, she was supported by large multidisciplinary teams who worked together to provide the best possible clinical care for babies like Aria.

“The nurses at both The Grace Centre and the Clancy Ward provided absolutely phenomenal care. They really went above and beyond to make it feel like you weren't in a hospital,” Amy said.

When talking about the role of fundraising and philanthropy in the care of sick babies like Aria, Professor Nadia Badawi AM, Medical Director of The Grace Centre, says

“By donating people are becoming part of our team. They are contributing to the meaningful way to the care of sick babies, who with their help are given the best chance at recovering. They are making it possible for us to extend our services beyond the expected to the extraordinary."

Joining this team and SCHF’s Movement of Many is the Humpy Dumpty Foundation who provide invaluable support to the Grace Centre. Last financial year, thanks to this partnership, we were able to provide two highly specialised ventilators that provide breathing support for sick and premature babies like Aria.

Dad Halle smiles down at baby Aria in an armed chai

(Dad Kalle smiles down at baby Aria in an armed chair).

For 237 days while Aria was in hospital, Amy and her husband Kalle made it their mission to celebrate every moment - when she reached the size of a forearm, when she was able to fit into baby clothes, and when she finally reached full-term baby weight. At seven months of age, Aria had reached a weight of 4.1kg, over eight times the size she was when she was born and was meeting all her developmental milestones thanks to the exceptional care she had received.

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“It was a surreal moment when we finally left hospital. It was such a massive accomplishment, but it also felt like we were leaving behind our extended family at

the hospital, all of whom were invested in Aria's success,” Kalle said.

Now settled in at home, Aria is continuing to grow, and her condition is being effectively managed through medications, with lots of support from her ‘extended family’. Kalle describes his little girl as his miracle baby, and says she is the happiest baby he’s ever seen.

Collage left to right: Mum Amy and Aria cuddling, Aria's parents holding her at the park

(On the left, Amy and Aria hug smiling at the camera. On the right, Amy and Kalle hold Aria in front of a swingset at the park).

As one of the largest and most trusted kids’ health charities in the country, Sydney Children’s Hospitals Foundation makes sure the funds we raise go directly to the frontline of children’s healthcare, to support sick children like Aria. To join our Movement of Many and help make a difference today, while helping to shape tomorrow, click here.

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