Matilda was the Christmas miracle her mum, Sian, didn’t expect. Rushing into the world four months early, 'teeny, tiny Tilly’ as she is affectionately known, made her grand entrance on Boxing Day weighing just 560g. She has been defying the odds every day since.
Before Tilly’s arrival, Sian had experienced a textbook pregnancy. There were no signs to suggest Tilly might be born premature so it was a shock to everyone when Sian unexpectedly went into labour.
Despite being born so early, Tilly was delivered naturally and remarkably was breathing on her own, but her tiny body was still working hard to survive. To help save her energy and support her breathing, Tilly was intubated and admitted to her local Neonatal Intensive Care Unit (NICU).
Tilly was soon diagnosed with Necrotizing enterocolitis (NEC), a form of intestinal disease that occurs when the tissue in the small or large intestine is injured or inflamed, and Retinopathy of prematurity (ROP), a condition affecting the way the blood vessels develop on the surface of the retina. Both conditions occur when a baby’s body hasn’t fully developed, but fortunately both are treatable.
Tilly spent three weeks in NICU before a specialised transfer was arranged with the Newborn and paediatric Emergency Transport Service (NETS) to move Tilly to The Children’s Hospital at Westmead for her ongoing care.
Here, Tilly was admitted to the Grace Centre for Newborn Intensive Care, and introduced to the doctors and nurses that mum, Sian, would soon come to know as family.
The Grace Centre, generously supported by Sydney Children's Hospitals Foundation, is a specialised unit caring for more than 600 premature newborns, neonates, and critically ill infants with complex medical conditions, like Tilly, every year.
“The Grace team were phenomenal the whole time we were there and I knew Tilly was in the very best of hands,” Sian said.
At three weeks and two days old, Tilly underwent her first major, and lifesaving surgery – an ileostomy procedure to treat the NEC.
Under the care of Paediatric Surgeon, Dr Ani Deshpande, the damaged part of Tilly’s intestine was removed, with the working section diverted to an artificial opening in the abdominal wall(ileostomy) while her body recovered.
For the weeks and months that followed, Tilly lived in a humidicrib. She relied on ventilation, the support of a CPAP machine, injections for her eyes and multiple blood transfusions but day by day, she started to get stronger.
“It was so hard for such a long time when Tilly was losing weight and was quite unwell but as the doctors and nurses said “one day it just clicks” and it certainly did,” Sian said.
“Eventually she was back on the weight chart in her blue book and then I just watched as she grew and finally got bigger.”
During this time, nurses worked closely with Sian and Tilly to promote her development and empower Sian too. This included involving Sian in feeding Tilly and changing her nappy, making sure Tilly had skin-to-skin cuddles with her mum, encouraging Sian to read and sing to Tilly and conducting regular developmental care rounds to track Tilly’s progress.
After 14 weeks of this supportive care, Tilly was well enough to not only come off the ventilator but also to have her ileostomy reversed. Three weeks later, she was ready to go home.
“Tilly didn’t have an easy journey - she overcame many, many hurdles but not once, ever, did any of her team give up on h
Since going home, Tilly has continued to grow in leaps and bounds, not only in size, but also in personality.
“Even after everything she has been through, Tilly is such a happy baby. She is very cheeky, is a bit of a drama queen and has sass like you wouldn’t believe. I blame her Grace Aunties for that,” Sian said.
While Tilly is still having regular check-ups for her eyes, she is progressing well and meeting all her expected milestones – a feat Sian attributes to the incredible support she received from her Grace family.
“Thank you doesn’t seem like enough. Without the support of the Grace Centre, Tilly wouldn’t be here today. They truly went above and beyond to help her,” Sian said.
“From the honesty they showed me throughout our journey, to supporting me in holding Tilly when she was only 560g, through to believing in Tilly as much as I did – they’re unwavering support go us through this.”
“They have become our family. By saving her, they saved me.”