The children who spend their first days, weeks or months in neonatal care at the Women’s and Children’s Hospital (WCH) have a very special way of marking their journeys.
Every milestone reached, every challenge overcome, is represented by a single bead.
Strung together, the beads tell a unique story, a story that the children – some of whom are now school-aged – can look back on as they grow.
The program is called Tiny Star Beads, and it made its way to Adelaide after midwife Mary-Ann Crossman came across the idea at a conference in Sydney in 2018.
"It initially started with the Stella Bella Little Stars Foundation," Mary-Ann, the WCH’s Associate Nursing and Midwifery Unit Manager in Neonatal Services said.
"That was launched in 2012 in the ACT for infants and children living with serious and long-term illnesses.
"I saw this at the conference and it resonated very strongly with me."
So much so that Mary-Ann set about establishing a similar program at the WCH.
"When I got back I put the wheels in motion to introduce the program here for us."
Since being introduced in 2018, the program has helped more than 350 families create a record of their baby’s health journey.
The steps along that journey can be times of great stress and worry for the baby’s family and loved ones, making the achieving of those milestones all the more meaningful.
"Each bead represents either a medical procedure or a milestone," Mary-Ann said.
"For example, it might be the baby needed some breathing support.
"It might be mum and dad's first cuddle, it might be coming off a monitor, the first bath or finally going home.
"So all those beads, when they're strung together, tell the stories of the baby's journey through the unit.
"It's a tangible memento that the parents get to create a keepsake.
"As children grow lots of little people want to know their story of their birth, this gives them a visual representation of what was involved when they were born."
Mary-Ann said Tiny Star Beads also provided a valuable way for parents and caregivers to come together and support each other.
"Through the program the parents attend a weekly group to collect the beads," she said.
"That group is facilitated by our social worker and our family support volunteers, and there is the opportunity to chat with other parents that are travelling the same journey that they are.
"So they get support from other parents, but they also get support from our social worker and our family support volunteers.
"They come together to collect their beads and it gives them an opportunity to acknowledge and celebrate the difficulties they've had that week, and to celebrate the milestones and the achievements that the babies have reached that week."
Mary-Ann said she had received some wonderful feedback and updates from families.
"We've had some beautiful photos sent back," she said.
"There have been occasions where they've had professional photos of their babies taken with the beads.
"As you can imagine babies that were born extremely preterm collect a lot of beads.
"I guess when the program started my vision was of a little child in reception saying, 'Here's my story', and holding up a string of beads as tall as they are."
Jasp
er's story
Jasper’s birth at 31 weeks was preceded by an 8-week inpatient stay, involving daily monitoring and conversations about what it would be like caring for a pre-term baby.
Despite a difficult start, Jasper was quick to demonstrate a cheerfulness and resilience that stayed with him as he got older.
He learned to breathe on his own within 12 hours and continued to meet key milestones that took him closer to going home.
Jasper’s parents still found it hard to watch him meet so many challenges.
When the Tiny Star Beads program was introduced, it helped to re-frame the experience and made it easier to see each bead as a milestone to celebrate.
"Hearing from parent volunteers who’d been through NICU before and making a keepsake helped us to picture life after the blood tests and NG tubes," said Mikaela, Jasper’s mum.
Jasper, now six, enjoys hearing about how he was born and is proud to tell the story about how brave he was when he was very, very small.
His beads are an amazing visual tool to help him understand and share about that part of his life.
Mat
ilda’s journey
Born at 31 weeks gestation, Matilda arrived weighing 1320g.
Despite her early start, she achieved significant milestones that her parents Sarah and David celebrated with pride.
In her first seven weeks of neonatal care, Matilda earned 65 beads, each representing a significant milestone.
From her first cuddles and baths to breathing on her own and overcoming digestive challenges, every bead reflected her progress.
For Sarah and David, the beads symbolise their daughter’s courage and the connections they’ve formed during this time.
"We’ve had amazing support and guidance while being here," Sarah said.
"The staff and volunteers are always checking in on us. Meeting other families and receiving our Tiny Star Beads each week has given us a sense of normality and comfort."
The Stella Bella Foundation (external site) generously provides the beads, which also feature in WCH’s Cardiology and Oncology programs.
