a day ago
Sunshine Coast mother Sarah-Rose Grauf writes book on baby-loss grief
WARNING: This article includes information and images relating to pregnancy loss and neonatal loss, which some readers may find distressing.
A Queensland mum has channelled the agonising grief of losing her three-week-old daughter into a book she hopes will help other parents grappling with similar grief.
Coolum couple Sarah-Rose and Marcus Grauf are among thousands of Australian parents grieving the loss of their baby — an experience no parent can prepare for.
Mrs Grauf spent three weeks in South Brisbane's Mater Mothers' Hospital in September 2023 after her daughter Pixie-Rose was born.
While pregnant, doctors had discovered the Graufs' unborn baby girl had CHARGE syndrome, meaning Pixie-Rose was at risk of being born with life-threatening defects because of a genetic mutation.
CHARGE syndrome affects one in 15,000 births.
The condition CHARGE is an acronym of the most common symptoms — coloboma (missing eye tissue), heart defects, atresia choanae (narrowed nasal passages), restricted growth, genito-urinary problems (affecting urinary organs) and ear abnormalities.
Pixie-Rose was born at Mater Mothers' Hospital on September 4, 2023, weighing 2.6 kilograms.
It was a natural birth, but she was put straight onto life support.
The Sunshine Coast mum said it was "almost impossible" to accept her daughter's death.
"As a mother, that's really hard … she looked chubby, she was cute, she looked healthy," Mrs Grauf said.
The family was able to spend about three weeks with their much-loved daughter and sister before making the heartbreaking decision to turn off Pixie-Rose's life support.
Her siblings had the chance to say goodbye to their baby sister before she died.
In a process she's called "pain to purpose", Ms Grauf has now released her book, Secrets to Baby Loss, A Guide for the Whole Family.
She said the idea for a book came through the journal she was writing.
"When we were stuck in the hospital, I was faced with a lot of different challenges," Mrs Grauf said.
"I spoke about it quite openly so I could heal."
With no guide to help her navigate her grief, Mrs Grauf went searching for answers.
"I couldn't find anything [to help] that grabbed my attention, that was visual, that was unique, that was a step-by-step guide," Mrs Grauf said.
As she was holding her dying daughter in her arms, and felt her last breath of air leave her tiny body, Mrs Grauf said she was winded by her own grief.
"It was the same breath-work technique I'd used [as an instructor] helping people through trauma," she said.
"It hit me quite hard, and I thought to myself, I need to help others, I need to live for her."
Mrs Grauf said it was the small things, such as daily breath work, nature walks, Pilates, and swimming in the surf that "saved her".
"I believe she was a gift and here for a purpose," she said.
Since losing Pixie-Rose, the couple has welcomed another baby.
Three-month-old Bear was born on February 13.
"Nothing is ever going to replace your child," Mrs Grauf said.
(Data from the Australian and New Zealand Child Death Review and Prevention Group)
