Palliative care nurse a beam of light for Grauf family in darkest hours

Palliative care was a beam of light for a Sunshine Coast family in dealing with a devastating grief after their tiny tot was born with a life-threatening heart condition.

Sarah-Rose Grauf with her daughter Pixie-Rose at Mater Mothers' Hospital. Photo: Supplied

For three emotionally charged weeks the Grauf family sat by the cot of baby Pixie-Rose waiting for the tot to pass.

Every moment with the newborn was precious as they knew she had a life-limiting condition that would steal her life away.

“Pixie-Rose lived for three weeks — the hardest three weeks of my life,” mum Sarah-Rose Grauf said.

“Walking out of hospital with a memory box and nothing else was devastating.”

But a beam of light in the form of a 27-year-old nurse, offering palliative care, helped the grieving family through the darkest of days.

Pixie-Rose Grauf was born with a life-limiting heart defect and rare genetic disorder. Photo: Supplied.

“Although it is very hard to witness every parent’s worst nightmare, Pixie’s final hours were spent peacefully having cuddles on the hospital balcony while the sun set, surrounded by endless love from her family,” clinical nurse Gemma Mugridge, from the Neonatal

Critical Care Unit (NCCU) at Mater Mothers’ Hospital, said.

“Pixie’s two-year old brother came with me to pick a flower. He then walked over and placed it on Pixie’s chest before kissing her forehead, it was such a beautiful moment,”  Ms Mugridge said.

When Mrs Grauf, from Coolum, was 29 weeks pregnant a scan showed her unborn baby had a life-threatening heart condition.

She was referred to the Mater Centre for Maternal Fetal Medicine at South Brisbane and just two months later she was dealt another blow when doctors revealed her daughter also had CHARGE syndrome and could be born with life-threatening birth defects.

Marcus and Sarah-Rose Grauf with their daughter Pixie-Rose. Photo: Supplied

CHARGE syndrome is genetic mutation of the CHD7 gene and affects just one in 15,000 births.

Common symptoms make up the acronym CHARGE – coloboma, heart defects, atresia choani (choanal atresia or blocked nasal passages), restricted growth, genitourinary problems and ear abnormalities.

Marcus Grauf watching over his precious daughter Pixie-Rose. Photo: Supplied.

Mrs Grauf, her husband Marcus and their children Jagga-Wolfe three, Lennox eight, Ocean-Rose, 11 and Taj, 14, were determined to make their daughter’s life as comfortable and peaceful as possible.

“I will forever have the memories of our sound healing session for Pixie, which was beautiful,” Mrs Grauf said.

“My sisters came and sang to her, and she was always surrounded by family.”

To cope with her grief, Mrs Grauf has written and will soon publish an e-book, Heal Mama, baby loss and love guide for the whole family, which aims to help other women who are grieving the loss of a child.