Sometimes a book is more than just words and pictures on a page; in the aftermath of a tragic loss, a book can provide support and a helping hand to start difficult conversations. In a bid to support siblings and parents navigating their personal grief journey after the loss of a baby, Canberra’s own Newborn Intensive Care Foundation (NICF) has launched the Stories from the Stars book drive.

Lyndsay Pastega experienced the grief of losing a baby and saw the impact it has on the whole family. In November 2019, the Pastega family welcomed their third child into the world, a daughter Francesca, aka Frankie. Unexpectedly and heartbreakingly at just two days old, Frankie took her last breath.

While dealing with their heart-breaking loss, parents Lyndsay and Ian had to explain to their three- and five-year-old children why they would be going home without their precious baby.

“It’s one of those areas that’s misunderstood still; grief is really difficult for adults to process and then for children, it’s equally as difficult for them to wrap their head around what is going on and why baby died,” says Ms Pastega.

November would have been Frankie’s fourth birthday and, wanting to give back to the hospital and support other families while honouring her memory, the idea for the book drive was born. Lyndsay says what they struggled with as a family was how to help their children process the grief of losing baby Frankie, so, with that in mind, they thought of helping to improve the support services for siblings after the loss of a baby.  

“When you go into grief and your world has completely fallen apart after your baby dies, you’re processing that, as well as then having those really difficult conversations with your children. Helping them to understand this really big event is made easier by stories and books and literature in a way that explains it in a language that children understand,” says Ms Pastega.

Speaking with NICF founder, Peter Cursley, who had also lost a child at two days old 30 years ago, they agreed there was a gap in the family support services for siblings.

“There’s some really incredible charities that support families after the loss of a baby in different ways, but there’s no charities that provide resources for siblings in this way. We were given a list of books from the social working team, and we were lent a book that we had to drop back, but we weren’t given anything for our children like this,” she says.

Working in close collaboration with other families who have experienced infant loss, the NICU staff and owner of the Book Cow, Peter Arnaudo, they put together a collection of grief books. The selection covers ages from toddlers to teenagers and includes support and services for parents processing their monumental loss as well.

“The NICU staff gave us a list of 20 books they frequently recommend to families after an event like this. We wanted to provide those books to the family so they would leave with them and those families could have those conversations with the kids straight away,” says Ms Pastega.

The Stories from the Stars book drive allows donors to choose a book from the list or donate a cash amount; any donation is tax deductible and, with no administration costs, 100 per cent of funds will go directly to purchasing books. The book drive’s name also honours their sweet Frankie.

“On the night our Frankie died, our five-year-old walked out to the backyard and looked to the stars and said a prayer to her, so we started this ritual in our home that we would talk to Frankie in the stars.”

While the hospital provided the family with wonderful support using the resources they had, Ms Pastega says sometimes in these situations, siblings might be overlooked. In the NICU, the baby is the focus of care and attention and then after a loss, the focus is on the parents; their grief and how they will process it. The loss is deeply felt by the whole family unit.  

“I would say it stripped our family back to a soul level, I’ve never experienced anything as devasting as that, and our children, it has really shaped who they are over the last few years,” says Ms Pastega. “Grief is relentless, it’s debilitating and it’s pervasive; it seeps into every aspect of your life. For children, it is very hard for them to understand why they are feeling those big emotions.”

Navigating the topic of death with a toddler or young child is hard, Ms Pastega says; it is a cruel age to learn about life and death, particularly after months of preparing for a new family member. 

“There’s nothing more exciting in a family than when a new baby is on the way for little siblings. Our five-year-old was incredibly excited about the fact that she was going to have a little sister.  My husband and I will forever be haunted by the memories of primal sobs when we told her Frankie wasn’t going to live.”

If they had access to resources like the ones they are now striving to provide, Ms Pastega says they may have been better equipped to talk with their children in the days following the loss of Frankie.

“The first night we lost Frankie, after we went out and said good night to the stars, my elder sobbed until about 3am. When you go through an event like this, you don’t sleep and so that night, I purchased eight or nine grief books because I didn’t know how to talk to her, I didn’t know how to support her through this.

“The next morning, a friend dropped around The Invisible String, a beautiful grief book. It’s about how we are linked by this invisible string. We read that to our kids every night for nearly a year and we constantly reinforced to them that there was an invisible string between us and Frankie.”

Encouraging other families who have experienced the loss of an infant to donate a book, Ms Pastega aims to provide recipients with a sense of hope that they can get through it, held by families who have been through this before.

“When I look back at who were in those first four months of that grief journey, knowing other families had been through that and survived brought us a lot of hope.

“We feel it’s also about the community holding those families and showing that they have that support from all of us in those first few days,” she says.

Something Ms Pastega was told at the beginning of her own grief journey was that she “will be okay”, and she wants other parents to know that, too.

“The first 12 months are definitely the hardest but a newer, stronger version of who they are rises from the ashes of that event and so I want families to know that there is hope and love on that journey, it just takes time.”

One of the ways you can support people in your circle who have a lost a baby is to honour that life by using their name.

‘If you know someone who has lost a child through miscarriage, stillbirth or neonatal loss, the greatest gift you can give them is to say their name. When you lose a baby, you lose the privilege to use their name in everyday conversation, so seeing it written, spoken and honoured is a gift to bereaved parents”.

The Stories from the Stars drive runs until Sunday 17 December, to donate visit newborn.org.au/support; or find the list of books; bookcow.com.au/c/stories-from-the-stars; follow the Newborn Intensive Care Foundation; instagram.com/nicf_cbr

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