World Prematurity Day 2020: Caring for the future


Tuesday, November 17 is World Prematurity Day, a globally celebrated awareness day to increase understanding around preterm births and the pain and suffering that families with a premature or sick baby can go through. Every year in Australia more than 27,000 babies are born premature.

This year we're promoting EFCNI's Global Alliance For Newborn Care's, World Prematurity Day message of 'Together for babies born too soon - Caring for the future'. World Pematurity Day helps to recognise, that for these families, the experience of having a baby come into the world not as expected or planned is life changing. It can be difficult to navigate this daunting and often frightening new world.

As Australia’s leading not for profit supporting premature and sick newborns, their families and the hospitals that care for them, Miracle Babies Foundation is proud to be launching a ground-breaking evidence-based online resource, whilst also forging ahead with our own research into improving paid parental leave for Miracle families.

Launching Nurture ‘E’ – The EEE Impact

In support of our vision for ‘better, healthier outcomes for newborns and their families challenged by prematurity or sickness’ and to help highlight World Prematurity Day, Miracle Babies has launched Nurture ‘E’ – The EEE Impact.

Nurture ‘E’ is an information hub on the revamped Miracle Babies website, created in collaboration with parents and health professionals to provide new and improved evidence, education and empowerment for families of premature or sick children, as well as the children themselves as they grow and develop. 

The new Nurture ‘E’ section of the website delivers information on life stages from pregnancy, in hospital, going home, the early years, the preschool years, primary school, high school and adulthood. Each stage provides Evidence, Education and Empowerment for numerous health concerns or risks that have been identified with longer term outcomes for those born premature or sick. 

At almost every step along the NICU/ SCN journey, the care for baby has received has been the result of research into the best way to care for a preterm or sick newborn.  The EEE Impact will include access and information on current and relevant evidence based research so families can be kept updated and informed on treatments and outcomes.
Where possible we will also include information of any current trials and studies families may participate in to further help improve outcomes.

We provide families with information and education that is language friendly for parents and carers to help them be the best advocate for their child as they navigate the school years ahead. This information is aimed at helping you, your extended family, friends and educational institutions deliver the care and developmental support best needed for each child.

We empower families with the right knowledge and a direction on how to find out more if they have any concerns for their child. We are here to assist families in being able to confidently advocate within their family and in their community for their family and their child. Here they can find links, suggestions on where to go for more help and connections with other organisations working in these areas.

“Nurture ‘E’ – The EEE Impact has been in development over the past 18 months and we are thrilled to finally be able to share this to benefit our community. The support for improved long-term outcomes is improving, however, it is still a relatively new area for research. Our work on the Primary School years has been very interesting.   It has revealed the vital need for schools and teachers to be more aware of the learning challenges experienced by children who were born premature or sick. One way to help schools identify at risk children would be for them to include a question asking if the child was born premature or sick when collecting medical history and information.” said Kylie Pussell, CEO & CoFounder.


Forging ahead to improve paid parental leave with new research

This year’s World Prematurity Day message of Caring for the Future highlights Miracle Babies’ work in advocating for improvements to the Australian Government Paid Parental Leave legislation, to better accommodate families with a sick or premature baby in hospital.

The Miracle Babies Foundation, the Centre of Research Excellence for Newborn Medicine at the Murdoch Children’s Research Institute, and The University of Melbourne are undertaking an important research study. This study will help us to learn more about your experiences of receiving Australian Government or industry paid parental leave schemes in Australia and the financial impact of having a baby (or babies) requiring hospitalisation directly after being born.

Watch the short video to learn more:

For these families, the experience of having a baby come into the world not as expected or planned is life changing. Caring for these babies creates increased financial, emotional, and time investment for parents. These families, often, find themselves needing to take leave from work unexpectedly and much earlier than anticipated.

Due to ongoing care requirements, the financial and emotional pressures of having to return to work earlier than planned can cause immense stress to the whole family unit. We know from previous research that parents of preterm babies are 2.5 times more likely to suffer postnatal depression. And one in five parents of very preterm babies still show symptoms of depression and anxiety six months after birth.

Furthermore, there is a gender-gap for parents in terms of parental leave, this is accentuated for parents dealing with premature births. Research conducted by Miracle Babies Foundation found 86% of dads or the partners or premature or sick newborns surveyed needed to return to work while baby was still in NICU or SCN. And we know from our previous campaigns that a third of fathers to very preterm babies experience high rates of depression, while half suffer from elevated anxiety levels.

In Australia, parental leave allows employees to take time away from work for the birth of their children. Eligible employees who are the primary carer of a newborn receive up to 18 weeks' paid parental leave at the national minimum wage. In addition to this, eligible working dads and partners (including same-sex partners) get two weeks leave paid at the national minimum wage (Reference: Fair Work Ombudsman - Parental Leave).

As Australia’s leading organisation supporting premature and sick newborns, their families and the hospitals that care for them, Miracle Babies Foundation recognises a gap in government funded support for families of premature or sick newborns who require the support of a NICU or SCN. Australia is falling behind other OECD countries when it comes to best practice regarding parental leave for families of sick or premature newborns. The UK and New Zealand are already taking action.

Kylie Pussell, CEO and Co-Founder of Miracle Babies Foundation, says, “Miracle Babies Foundation is calling on the Commonwealth Government to make priority a review of current legislation on parental leave, taking into consideration family needs for premature and sick babies and work to improve paid parental leave for NICU/SCN parents. We want to see parliamentary consultation and conversation about this issue that can accommodate more for these families with different and unique needs to support for better long term outcomes of the babies and the family unit.

We plan to use the study results to help advocate for changes to paid parental leave schemes around Australia.
Taking part involves completing this online survey: