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.
“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.
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, A/Head of Burns and Staff Specialist at CHW had operated on in 20 years. The surgery was described to Aria’s parents as being as delicate as tying together two tiny, wet noodles.
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 a range of teams and specialists including surgical teams, gastroenterologists, neonatologists, nutritionists, social workers, nurses and volunteers.
Amy says they wouldn’t be where they are today without the expertise and dedication of the multidisciplinary teams who supported Aria and their family throughout her time in hospital.
“If it wasn’t for the amazing knowledge and training of the neonatal doctors, the birthing team, the surgical team, the gastroenterologists, the NETS team and of course, the incredible team in the Grace Centre, Aria wouldn’t be here today”, Amy said.
It’s only through working in close consultation that large multidisciplinary teams like this are able 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.
“The teams of doctors were also amazing. They consistently laid out the plan for Aria and were able to give us a path forward, even during our most uncertain times. We also had extensive help from the volunteers, who kept Aria company when we weren't able to be at the hospital. It was truly a team effort.”
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.
Then came Kalle and Amy’s Christmas miracle. After 237 days in hospital, Aria was discharged, just in time celebrate her first Christmas at home, surrounded by friends and family.
“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. Reflecting on their experience, he said his advice to other families in a similar position is to stay hopeful and not to be afraid to ask for help from family and friends.
“It’s a daunting situation, but your family and friends are there to help, and they want to help, so remember that you’re not alone. The best and only thing you can do is continue on the path forward and focus on trying to keep positive.”
For Amy, it’s all about holding on to every moment and memory, no matter how small.
“Take lots of photos, keep mementoes and ride the wave; remember that it’s okay to feel however you are feeling in that moment. It’s incredibly hard at the time, but looking back, you’ll truly appreciate having something so precious to look back on.”