Palliative team supports mum through loss of Pixie-Rose

A mother whose baby was born with a life-limiting heart defect and rare genetic disorder has thanked the neonatal team at Mater Mothers’ Hospital for caring for her daughter through her short life.

Sunshine Coast couple Sarah-Rose Grauf, 38, and Marcus Grauf, 36, are sharing their story to keep the promise they made to their daughter Pixie-Rose that they would share their journey to help other families cope with grief.

Mother-of-four Mrs Grauf endured three “emotionally charged” weeks by her baby’s cot in the Neonatal Critical Care Unit (NCCU) at Mater Mothers’ Hospital.

Together with her husband and younger children, she watched Pixie-Rose “slowly slipping away”.

“She lived for three weeks – the hardest three weeks of my life,” Mrs Grauf said.

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

Clinical Nurse Gemma Mugridge, 27, was one of the nurses who cared for Pixie-Rose in the Cardiac/Surgical NCCU in her final days.

She said there is a misconception that palliative care is about death or for “old people”.

“Palliative care is very broad and not always just for the end-of-life care. It focuses on improving quality of life with symptom and pain management,” she said.

“For babies with life-limiting conditions, palliative care can provide comfort and support for them and their families during a very difficult time.

“Opening up this conversation helps ensure that everyone receives the care and dignity they deserve, regardless of age.”

Ms Mugridge and her colleagues enabled Mrs Grauf’s wish for Pixie-Rose’s last moments to be spent outdoors surrounded by her immediate family.

“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,” Ms Mugridge 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 caring for a palliative baby differed with each family.

“Parents are under a lot of stress just having a baby in the NCCU, let alone considering what happens when they are told their baby is unlikely to survive,” she said.

“My focus is supporting the family through this prognosis and working with them to find out what’s important to them so they can spend quality time with their baby, while making memories and celebrating their baby’s life.

“In the past we have transported a ventilated baby to church to be baptised and have had pastoral care and bereavement services that help organise memory making, sound therapy, and blessings.”

Mrs Grauf, of Coolum, was referred to the Mater Centre for Maternal Fetal Medicine at South Brisbane's Mater Mothers' Hospital after doctors on the Sunshine Coast found her unborn baby had a life-threatening heart condition during her 29-week pregnancy scan.

Just two months later, Mrs Grauf was dealt another blow when doctors revealed her daughter also had CHARGE syndrome and could be born with life-threatening birth defects.

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.

Pixie-Rose was born at Mater Mothers’ Hospital on 4 September weighing 2.6kg.

Mrs and Mr Grauf, and their children Jagga-Wolfe (3), Lennox (8), Ocean-Rose (11) and Taj (14), were determined to give Pixie-Rose a chance at survival and worked with the team at Mater 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.

“I want other women to know they are not alone,” she said.

“So many of us have been through this journey and it is one not spoken about enough.”