Agnes was born preterm to parents Shannon and Kim at 23+1 weeks gestation following a rupture of membranes at 19-weeks old.

“Agnes came to the RCH when she was one month old for closer observation because she had not passed meconium/stool. Arriving at the RCH was really intense and shocking for us to adjust to a new environment and way of doing things” Shannon and Kim said.

Soon after arriving, Agnes had emergency surgery on her bowel to form her first stoma. “It was an agonising wait for the procedure to be over as she was so small at the time of surgery.”

Just four days after this operation, Agnes underwent emergency surgery again in order to repair a perforation in the bowel and to form a new stoma.

“It was very impressive how quickly they were able to relocate all the theatre equipment to her room in the Butterfly ward. Everything was very intense at this time.

“She remained on a ventilator, including the jet ventilator, for eight weeks. It was a constant soundtrack of alarms with bradycardia (slow heart rate) and desaturation (low blood oxygen concentration).

“In this time especially, Arnie and Polly from the COCOON team empowered us to find ways to bond and connect with our daughter. We cuddled her often, learnt to read her cues, provided comfort during procedures, brought her own personal linen, read lots of books and were involved in her daily cares including her stoma changes. We learnt to be her voice and advocate for what she needed and didn’t need.”

Over the next few months, Agnes had three further procedures on her eyes, another bowel surgery to make the stoma she would come home with, countless blood tests and twice daily clexane injections.

“We worried again that we would lose her when she became severely septic and returned onto life support at 37-weeks, but she managed to pull through and return to her cheeky self.”

Agnes finally returned home at one month corrected age.

“Now, Agnes is 16-weeks corrected (as of 17 November 2022) and continues on home oxygen and nasogastric feeds while awaiting stoma reversal surgery. She is alert, giggles, loves toys, people, books and mirrors. She has regular therapies to monitor her development and multiple follow up appointments. She still loves getting out and about and our family can’t wait to spend more time at the beach as the weather warms up.

“World Prematurity Day is an important time to reflect on this experience and what it has taken for Agnes to be where she is today.

“We are so thankful not only to the staff at the hospital, but also a wide network of friends and family who kept us going through five months of showing up every day and also finding ways to care for ourselves. Parents of premature babies experience unique trauma and anxiety, extending well beyond their time in the nursery.”

17 November marks World Prematurity Day, a day observed globally each year to raise awareness of preterm birth and the impact it has on families.