Sarah-Rose Grauf, a Coolum local turned an emotionally shattering tragedy of losing her newborn daughter, Pixie-Rose. Today, she’s become a light of hope to other grieving parents. In her newly published book titled “Secrets to Baby Loss, A Guide for the Whole Family,” Grauf shares her journey through grief and healing after her daughter was born with CHARGE syndrome, a rare genetic disorder that affects approximately one in 15,000 births. This frank and thoughtful guide is a large part of what she calls her “pain to purpose” process.
Pixie-Rose sadly only survived to three weeks old before her parents had to make the heartbreaking decision to switch off her life support. Diagnosed with CHARGE syndrome prenatally, the Graufs were challenged from the start. Grauf recounts in heartbreaking detail the tidal waves of despair that crashed over her as she cradled her daughter’s lifeless body. This experience deeply impacted her perspective on the beauty of life.
The Impact of CHARGE Syndrome
CHARGE syndrome is made up of a constellation of congenital congenital disabilities. These include coloboma, congenital heart disease, choanal atresia, growth restriction, genitourinary malformation, and ear morphology. Sarah-Rose Grauf came to the end of her fellowship in Pixie-Rose’s company. She opened up about the emotional and physical toll that the condition took on her life.
When we were trapped in the hospital, I climbed a mountain of competing priorities,” Grauf added. Forcing her to come face to face with the realities of her daughter’s condition and how it was affecting their family were some of these challenges. As an artist, Grauf drew empowerment from her powerful routines. Nature walks, Pilates, and swimming provided her peace while she navigated the pain of losing her soulmate.
Grauf’s son, Bear, was born just three months after Pixie-Rose’s death, bringing both joy and complexity to the family dynamics. Though Bear marks the beginning of a beautiful new chapter for the Graufs, Sarah-Rose knows that nothing will ever heal the loss of Pixie-Rose. Nothing is ever going to fill the hole of your child,” she said.
Finding Healing Through Writing
In overcoming her grief, Grauf wanted to produce an object that other people in similar situations could connect with. She quickly noticed a void in the academic literature on baby loss. Inspired by her discoveries, she set out to produce a helpful guide that would be visually distinct and engaging while being simple to browse.
“I couldn’t find anything [to help] that grabbed my attention, that was visual, that was unique, that was a step-by-step guide,” she explained. Writing transformed into a therapeutic form of expression for Grauf. Though she lived in deep pain, she used her grief to provide actionable wisdom to other families who must face tragic loss.
Grauf added breath-work techniques to her coping strategy. She had used these practices as an instructor to guide others through overcoming trauma. It was the same breath-work technique I’d used helping people through trauma,” she remembered. This tactic allowed her to stay in control of the crushing feelings that came with her loss.
A Message of Hope
With “Secrets to Baby loss,” Sarah-Rose Grauf wants to give bereaved families a feeling of being understood and comforted. She has faith that every child’s life is important, even if the time they have with her is limited. “I believe any baby, any child, [who comes] into this world is a gift,” she passionately stated.
Grauf’s story reminds us that though grief is vast and heartbreaking, it can serve as the catalyst for personal transformation and finding meaning. “I do think she was a gift and here for a reason,” she thinks back on Pixie-Rose’s brief life. Her story loosens the threads of life to remind us that loss is painful and searing. It opens the doorway to healing through shared experiences and understanding.
