WEDNESDAY, MARCH 3, 2021
As a mother of three boys who were born premature, Miracle Babies founder, Melinda Cruz is passionate about improving the lives of families with a sick or premature baby. Part of that journey includes participating in and promoting research which contributes to improvements in standards of care and long-term quality of life for these babies and their families.
As parents, there is an underlying understanding that the care our babies receive today is available because of others before them taking part in research. Increased parent involvement and input on the design of trials is becoming the standard and crucial in advancing health.
Research happens in NICUs across Australia, and around the world. Every trial that happens within Australian NICUs has gone through very strict protocols and guidelines, had input by NICU parents and has undergone independent ethics approvals.
Speaking in a recent interview with the Australian Clinical Trials Alliance, Melinda explained the need to change community culture and awareness around research and why it is important to engage families in the design of research. Melinda also wants researchers to ensure families see the outcome of research they are involved in.
“It is a lot for families to say yes; but to know that their journey, their baby, has made a difference for future babies – there’s something in that and it’s very healing.”
Watch the full video:
It is one of the reasons behind the newly created Miracle Babies NurtureNetwork – a community of committed NICU/SCN parents and carers who are willing to participate and share their experiences, information and points of view. The families that make up our NurtureNetwork are helping further the mission of advancing health and outcomes for babies born early or sick; and are providing a parent voice to the design and delivery of research and trials.
If you are the parent or carer of a premature or sick baby who has spent time in a Neonatal Intensive Care Unit (NICU) or Special Care Nursery (SCN), or you were born early or sick yourself, and you are passionate about helping to advance the care our babies receive, we’d love for you to join our NurtureNetwork.