Dylan and Rochelle Evrard faced an unimaginable tragedy following the birth of their daughter, Milli Rose Remidy Evrard, who succumbed to a rare genetic condition just six days after her arrival. Born on July 14, 2023, at the Pindarra Private Hospital in Gold Coast, Australia, Milli was unable to be saved despite the couple’s joy at welcoming their long-awaited child.
The Evrards celebrated their wedding in March 2023, a moment filled with hope and anticipation as they awaited the birth of their first child. Rochelle was 22 weeks pregnant at the time, having overcome significant fertility challenges, including severe endometriosis. The couple had longed for a baby after years of trying to conceive, making Milli’s birth all the more special.
Tragically, Milli entered the world with two broken arms and two broken legs, conditions that were not detected during pregnancy. Despite Rochelle’s concerns about not feeling the baby move, scans and tests failed to reveal any underlying issues. “My whole pregnancy, I was expressing that I was a bit concerned,” Rochelle shared. “I never had a kick count.”
Within hours of her birth, Milli was transferred to the Mater Mothers’ Hospital neonatal critical care unit in Brisbane. During her brief life, she opened her eyes and connected with her father, Dylan, a moment they will cherish forever.
The Evrards had meticulously prepared their home in Mudgeeraba for their new arrival, complete with a pink nursery and a baby capsule in their vehicle. As they faced the heart-wrenching reality of an empty car capsule, Rochelle recalled, “Someone needs to go find our car and remove the capsule.”
As part of the grieving process, genetic testing was conducted after Milli’s death. It revealed that she had nemaline rod myopathy, a rare musculoskeletal disorder affecting approximately one in 50,000 live births. This condition was attributed to a mutation in the ACTA1 gene, which was not inherited from either parent but rather occurred spontaneously, known as a “de novo mutation.”
According to Professor David Coman, a clinical geneticist at Queensland Children’s Hospital, Milli’s genetic condition was a result of a mutation that impacted her muscle strength and bone density. “Babies who don’t move in the womb often have really thin bones,” he explained, likening the situation to osteoporosis.
Following Milli’s death, the Evrards sought clarity and comfort in knowing they had not passed the disorder to their child. Armed with this information, they began in vitro fertilization (IVF) four months later. After a miscarriage and additional surgery for Rochelle’s endometriosis, they successfully conceived again.
On May 2, 2023, the couple welcomed their son, Huey Hendrix Evrard. Rochelle, now 39, has found joy in parenting again, despite the anxiety that lingered from her previous loss. “Even though I knew he was healthy, I just kept saying: ‘What if he dies? What if he just dies?’” she admitted, reflecting on her emotional journey through Huey’s pregnancy.
The family is now embracing the challenges of parenthood. Rochelle humorously described Huey’s night-time antics, saying, “He sounds like a goat in the middle of the night. He’s very loud.” The couple views their new son as a source of healing, with Rochelle stating, “You appreciate it a whole lot more when you didn’t have it last time.”
As they navigate their path forward, the Evrards remain grateful for the time they spent with Milli, cherishing the memories created in her short life.
