12 hours ago
Mother creates a book to help siblings navigate neonatal intensive care
When Deloraine mother Jayne Case went into hospital to have her third child, things didn't go to plan.
Her son was born with kidney issues and the new family of five needed to temporarily relocate to Hobart, three hours from their home in Tasmania's north.
The family was based at the Royal Hobart Hospital's Neonatal Intensive Care Unit (NICU) for six weeks.
"He needed a lot of extra support and help once he was out in the world," she told Tracey Strong on ABC Radio Hobart Evenings.
The newborn required surgery at eight days old, and the lives of her eight-year-old and five-year-old sons were turned upside down.
"They moved from a quiet country life straight into the heart of Hobart at Ronald McDonald House," she said.
"That was a bit of a transition for them both."
Ms Case said the NICU was quite confronting at first, and very different to how her sons thought they would meet their new sibling.
"It's not what you're ever expecting when you think of a newborn baby, especially when you've waited for your little brother for so long," she said.
The NICU is on a separate ward and floor to the maternity ward.
"In terms of newborn babies and how we expect them to be in their mother's arms, in their mother's bed in the maternity ward in the hospital, it's not like that at all," she said.
"Most of the babies are absolutely tiny and they've got cords and tubes and all sorts of life-saving monitors around them.
Ms Case said at one point she couldn't hold her new baby for five days.
Ms Case said she and her husband tried to stay together at the hospital so they could help each other digest any news from medical staff.
"When the doctor walks in the door you never know what they are going to say," she said.
"We needed lots of extra help with the other boys.
She felt that she needed something to help explain to the boys what was going on.
"None of us had the brain space to do that," she said.
"I thought it'd be great to have a book and went online and tried to find something, but I couldn't find anything that was suitable."
It inspired her to write something herself.
"I held onto the idea and one night when he was four or five months old it just appeared in my brain just like magic," she said.
The book, Counting on You, was released at the start of June and is written from the perspective of a boy called Otto who loves numbers.
It goes through all the different things Otto did to help himself cope during his baby brother's NICU time.
"It's personal for me but I know it'll be really helpful for other siblings of NICU babies to see themselves in this big scary journey," Ms Case said.
"Until you've experienced it yourself it's really difficult to get your head around."
Her now two-year-old will have life-long kidney issues.
"He's an amazing little kid, we all absolutely adore him and will do absolutely anything for him," she said.
"I hope [the book] helps siblings and families going through a similar journey to find comfort and hope and recognition of how things are for them.
"I'd love to also help other families and children who haven't experienced the NICU world to have a greater understanding and empathy of other people's stories."
