Christmas should be a time of joy for families, but for one Gold Coast couple who lost their six-day-old baby to a rare genetic disease it is a time of heartbreak.
Rochelle, 38, and Dylan Evrard, 32, lost their daughter Milli to Nemaline Rod Myopathy – an incurable and rare genetic disorder.
The condition affects one in 50,000 babies and is a congenital, often hereditary disorder, with symptoms including muscle weakness, hypoventilation and swallowing dysfunction.
Milli was transferred to the Neonatal Critical Care Unit at Mater Mothers' Hospital in South Brisbane just hours after she born at a Gold Coast hospital on 14 July last year, as doctors worked to establish why her condition was deteriorating.
Mrs Evrard, from Mudgeeraba, said the combined efforts from staff at Mater's Centre for Maternal Fetal Medicine (MFM) and "divine emotional support" from Mater's bereavement team had helped her and Dylan process the grief of losing their baby girl.
"We didn't find out anything was wrong with Milli during pregnancy scans," Mrs Evrard said.
"It wasn't until she was born that we realised something was seriously wrong. She was floppy and purple.
"Despite the circumstances, we had the best experience at Mater."
Mrs Evrard said Mater's bereavement team organised a Precious Wings memory box and a Heartfelt photographer to capture Milli's final moments with them.
"From the entire Neonatal Critical Care Unit to the nurses, doctors and neonatologists, we couldn't have asked for a better team to navigate us through this journey," she said.
Now expecting her second child in April, Mrs Evrard admitted it was difficult to get into the spirit of Christmas.
"We should have an almost 18-month-old crawling around, pulling decorations off our tree, but we don't," she said.
"I'm sharing my story because not many people talk about what it's like to celebrate Christmas after the loss of a baby."
Mrs Evrard described her first Christmas last year without Milli as "devastating".
"I think I was in shock – it really rocked me. I was so sad, hysterical," she said.
"We had cute little outfits ready for Milli to wear and later when we unpacked them, I burst into tears.
"We also had a gorgeous bauble made in hot pink with an angel painted on it, her name and 'Milli's first Christmas 2023'.
Mrs Evrard said the pain of losing her daughter would never go away.
"I am praying that by Christmas next year I will have Milli's brother, a precious baby boy in my arms," she said.
Mater Mothers' Perinatal Loss Coordinator Emma Porter said bereaved parents are offered memory creation, emotional support, referral to community resources and ongoing follow ups.
"Mater acknowledges rituals unique to the family's cultural requirements or spiritual needs and encourages extended family and friends to build memories with their baby," Ms Porter said.
"We get only one opportunity to meet their needs during these difficult times, so it is important to embrace their journey to create the life story for their beautiful baby shaped with the parents' wishes."
Mrs Evrard said she documented her daughter's passing on social media and started her own podcast to help cope with her grief.
"I started interviewing other bereaved parents and what I found was a lot of us, understandably, did very similar things through fear, like leave the hospital abruptly," she said.
"Some people don't often look at their baby when they die, they don't talk to them, they don't take photos or spend time with them.
"I am so grateful we had so many photos and we spoke to her so much, and we played music to her."
Mrs Evrard said with Christmas around the corner, she understood the heartache many other parents have gone through after losing a child.
"We will have family here at our house and, just like any day, I always imagine what things would be like with Milli here," she said.
"Christmas time will always be tough, but we know we are not alone."
To listen to Rochelle's podcast visit Little Life Big Loss.
