A University of Western Australia Master's student who survived complex surgery as a newborn is now helping lead research to improve outcomes for babies facing similar life-saving procedures.
Mia Cahill was just hours old when she underwent life-saving surgery in Dublin for gastroschisis, a rare congenital condition where a baby's intestines and other organs develop outside the body through a hole in the abdominal wall.
Now calling Perth home and completing her Master of Public Health at UWA, 23-year-old Ms Cahill joined the FROG (Focused Research priorities to improve Outcomes and Guide care) project led by Professor Britta Regli-von Ungern-Sternberg, Chair of Paediatric Anaesthesia at UWA and Perth Children's Hospital (PCH), and Dr Rebecca Thomas, Consultant Neonatologist at PCH.
Both are members of the UWA Institute for Paediatric Perioperative Excellence which aims to give a voice to families facing similar challenges.
"My parents fought endlessly for me to get to where I am today and while I'm fortunate to live a normal life now, many babies born with conditions requiring major surgery aren't as lucky," Ms Cahill said.
Image: Baby Mia with her parents (left) and at Perth Children's Hospital (right).
The consumer co-designed study aims to create the first-ever list of what patients, carers, families and healthcare workers believe should be the top priorities for research into newborns undergoing major surgery shortly after birth, to help ensure future studies focus on what matters most to those affected.
"These babies have unique needs and challenges that deserve focused research attention, and we want to ensure their families' voices continue to be heard and help shape future research directions," Professor Regli-von Ungern-Sternberg said. She also co-leads the Perioperative Care Program and Perioperative Medicine Team at The Kids Research Institute Australia.
The project is seeking input from two key groups:
• Healthcare professionals (doctors, nurses and allied health professionals) caring for newborns requiring major surgery; and
• Families, including parents, siblings and extended family members who have cared for these babies, as well as former patients who are now adults.
"The journey doesn't end at Neonatal Intensive Care Unit (NICU) discharge," Dr Thomas said.
Image: A happy Mia as a toddler.
"Our study aims to identify top research priorities for newborn surgery by gathering input from both healthcare workers and families affected by these procedures to create the first-ever comprehensive list of priorities to guide future research in this field."
The initial survey is open until March 31, 2025, with results to be refined through community workshops later in the year to establish the top 10 research priorities.
To participate, healthcare professionals should click here and families and former patients, here