As this year’s Miracle Month of May comes to a close, I thought it timely to share some highlights from this special month.
After enjoying some personal annual leave time in Europe, I headed to Freising, Germany for the 2023 EFCNI Parent Organisation Summit. This Summit was my third visit and is always so inspiring being in a room of so many other like-minded spirits, parents, past patients and clinicians all working across the globe to improve care and outcomes for those born premature or critically ill.
There were powerful presentations from ‘Empathy is a powerful “social glue” - encouraging people to put themselves in our shoes’ by Dr Eleni Vavouraki, Ilitominon, Greece, ‘The development of a professional psychological parent support from a simple peer counseling to having a psychologist in the NICU’ from Jarmila Sestrienková, malíček, Slovakia and ‘Preemie Chats: from a simple Q&A session for parents to a main source of education for various stakeholders’ by Fabiana Bacchini, CPBF, Canada.
We all joined together in a celebration dinner for 15 Years of EFCNI where I was extremely surprised and so proud of our team as Miracle Babies Foundation was awarded an international EFCNI Award for our Nurture E – The EEE Impact. Warmly referred to in our office as EEE, this information hub is a world first resource for families with babies born prematurely or sick.
We now know so much more about the ongoing and sometimes lifelong challenges and health risks these babies may face throughout their different life stages. Our EEE life stages of Primary School Years, High School Years and Adulthood is parent developed and aimed at providing parents and ex patients themselves with evidence based information, education in easy to read language, and empowerment of how to best advocate for their child and themselves through these life stages.
We still have a lot of work to do with other life stages being designed and all our team have had a part to play. Congratulations to you all for such wonderful work. It is quite emotional that the challenges and life experiences that we have faced as parents and with my own children born prematurely that this valuable resource can now help so many other families across Australia and the world.
There was more learning on day 2 with the amazing ‘Nurturescience and Zero Separation’ by Dr Nils Bergmann, Consulting Public Health Physician (Perinatal Neuroscience), Stockholm, Sweden. It was very special to see this presentation and the passion and enthusiasm displayed by Dr Bergmann. We also heard from PD Dr. Britta Hüning, neonatologist and medical director of the Social Medical Follow-up and Central Pediatric Discharge Management, University Hospital in Essen, Germany with ‘Qualitative Discharge Management and Follow up for former preterm infants’.
Finishing the afternoon with workshops that gave important updates and learning opportunities, it was certainly a busy and full-packed few days.
That evening I was very honoured to be elected to the EFCNI Parent and Patient Advisory Board for a 3 year term and am so looking forward to working with this amazing group of global game changers to improve care and outcomes for newborns and their families throughout the world impacted by prematurity or sickness. https://www.efcni.org/organisational-structure-2/parent-advisory-board/
Many wonderful friendships, connections and memories were made at the Parent Organisation Summit and I’m excited to see the life changing work we will be able to do together for our communities across the globe.
On returning to Australia we continued to celebrate the Miracle Month of May with thanking and acknowledging the huge effort and commitment that comes from our volunteers right across Australia with National Volunteers Week. Without their help and time, we would not be able to support and reach as many families as we do.
We also highlighted International Kangaroo Care Awareness Day on the 15th May. We fully support the global movement of immediate kangaroo care and Zero Separation for mothers and babies and thank you to the participating hospitals for raising awareness of this life saving and changing connection between mothers and their babies as soon as possible at birth.
I was privileged to attend our first ever Sydney High Tea and then also our Perth High Tea. With our Perth High Tea becoming such an amazing part of our calendar, we decided to share this special event more widely with our first Sydney and Melbourne High Tea. Thank you to all those that came, donated and supported.
Another exciting highlight was our Quadruple Giving Day where our amazing community raised over $130,000. This result was simply magical, considering financial stresses on many Australian families. We are so thankful to our super matching donors, Mounties Group as our Founding Matching Donor for this campaign have really backed our work for many years and our impact for families and we are so appreciative of this special partnership. Thanks also to Natalis, BabyLove, Infloran and Water Wipes. Together with our community we will be able to reach and support so many more families impacted by the birth of a premature or sick baby.
Our Miracle Month of May is so special and I would like to say thank you to our staff and volunteers, all who work so hard to bring together our Miracle Month of May. It was also wonderful to see our All Grown Up campaign over the month where we shared stories of now adults who were born premature or sick. In the aim to bring hope to our community of how amazing our miracle babies can become with whatever their life pathway.
Thank you for being part of our community and sharing your stories and supporting us in helping many more families reach their full potential, all feeling educated and empowered to shine in their own way.