Tiny beads to chart a baby's journey
Parents of babies in newborn care collect beads to mark medical milestones and challenges
Parents of seriously ill babies in RPA's special care nurseries are collecting tiny beads to chart medical milestones and celebrate the challenges their littles ones have overcome.
The Tiny Star Beads program has 41 different beads for parents to collect and string together to create a bracelet or necklace that tells each baby's personal story. Some babies earn more than 100 beads before they go home for the very first time.
"The beads show the journey. It's a visualisation of what each family has gone through and the hurdles they've overcome," Monique Manzanera, a social worker in RPA's Neonatal Intensive Care Unit, said.
"There's a red bead for a blood test, a yellow duck for a first bath, a turtle for an extra-long stay, and a plane for a transfer to another hospital," she said.
It's an idea based on the concept of narrative therapy, where people find meaning and healing through telling their story.
"Sometimes babies can be here for three months or more. It can be a bumpy road. There are highs and lows. Sometimes it's one step forward and two steps back.
"It's stressful for parents to be separated from their babies… not being able to hold them or feed them in NICU… it's quite hard and parents can be quite upset.
"Having the beads is going to aid the emotional process for them and open up a conversation about it."
Jessica and Jarrod Irving already have a string of beads that document their baby Ava's medical journey.
During her pregnancy, Jessica's placenta stopped working properly and wasn't supplying the oxygen and nutrients Ava needed to grow.
Ava was born at 25 weeks and five days at John Hunter Hospital in Newcastle weighing just 480 grams.
"It was a bit of a shock. We spent five weeks at John Hunter until she was stable enough to be transferred and we were in the NICU at RPA for 116 days," Jessica said.
The Tiny Star Beads program was already running at John Hunter, so they collected beads of different colours and shapes when Ava underwent procedures like blood tests, transfusions, cannulation, and respiratory support.
They also collected beads to to mark special milestones. "I collected a bead when I had my first cuddle on Mothers' Day," Jessica said.
"We weren't given very good prospects about Ava's survival. So, the bead program … it gave us a sense of accomplishment that we'd overcome little challenges.
"It's a simple idea and it had a real impact on me. It makes you feel important and that your baby's life is important," she said.
Now that the program has begun at RPA, Jessica plans to complete Ava's string of beads adding those from her time in NICU.
Parents who register for the Tiny Star Beads program get a starter string which includes their baby's name, a Little Star bead, a Commitment of our Care bead and a bag to store the beads.
They also receive a booklet in which nurses record their baby's procedures and milestones before the beads are collected.
The program was developed by the Stella Bella Little Stars Foundation, which aims to create a positive experience for children who are diagnosed with a serious long-term illness.
To find out more, see https://stellabellalittlestars.org.au/