In a maternity ward at Nepean Hospital in April, Lawson couple Jesse Star and Rebecca Le-Cornu faced devastating news upon the delivery of their twin babies.
Born eight weeks premature, Eden Rae was tiny and weak but would survive. Sadly, her twin sister Willow Rose, would not.
Scans showed she had suffered a life-threatening congenital defect or a hypoxic attack and had weeks, at best, to live.
"Straight away I could see Willow Rose didn't look quite right, she didn't cry and clearly there was something wrong," Ms Star said after her partner gave birth.
"I work in palliative care and I've worked as a funeral celebrant so death and the dying process is my passion, but I never imagined that one day I'd experience one of my children dying.
"We were absolutely devastated, but our independent midwife Jo Hunter and the staff at Nepean Hospital's Neonatal Intensive Care Unit, particularly Dr Lyn Downe, were amazing.
"They gave us what's called a 'quiet room' within the hospital where the twins could be side-by-side in humidicribs."
They were then offered use of a cuddle cot when needed - a device that maintains a cold enough temperature to delay the body deterioration process long enough to allow parents and relatives more time to say goodbye to their baby, rather than having to go to a mortuary or hospital cool room environment.
Then the couple gave Dr Downe an unusual request: "we want to take our baby home to die.
"To their great credit, the hospital staff never said no and despite it being a huge effort, they provided everything to make this happen," Ms Star said.
"Willow Rose was able to die at our home and with the cuddle cot, my partner, my 14-year-old daughter Ari and I were able to have the time and privacy to cuddle her, sing to her and fall asleep with her.
"We were also able to have relatives and close friends come to spend time with her too.
"That time will remain the most treasured memories that we will hold dear forever.
"It wouldn't be everybody's cup of tea who find themselves in a similar situation.
"But it can help to provide a deeper sense of healing during one of the most challenging of experiences, so I'd definitely recommend it," Ms Star said.
The family are now members of the Blue Mountains Parents and Friends Finding Strength group and they've set up a fundraising page (Cuddlecots in honour of Willow Rose) on the YouCaring website to raise money for a cuddle cot for community use, where appropriate, at Nepean Hospital.
They will also be attending the second annual Pregnancy and Infant Loss Remembrance Day ceremony at Nepean Hospital's Intensive Care Education and Training Centre (level 3 west block) at 10am on Wednesday, October 15.
Ms Star said it is important a day is dedicated each year to recognise and honour the lives of babies and infants who have died as a result of miscarriage, stillbirth, Sudden Infant Death Syndrome or other post-natal causes.
"I would like to attend every year."
