After our beautiful daughter Emma died, I had two very strong, almost innate urges. The first was that I wanted her to be remembered. She is my baby, I will always be her mother, and she is loved. Secondly, I didn’t want any other family to have to feel the intense loss and longing that I felt. After Emma’s first birthday and anniversary I re-connected with staff at the Canberra Neonatal Unit where Emma had lived most of her very special life.
Through this I learnt about the Family Centred Care Advisory Group that was made up of varied neonatal health professionals and parents and The Newborn Intensive Care Foundation. I volunteered in both and, with their guidance and support of the Foundation and a fundraiser we were able to purchase a cooling blanket for the NICU in Emma’s memory.
A few years later another opportunity to contribute became available through a “Caring for dying babies and their families’ research project funded by The Newborn Intensive Care Foundation. I jumped at this opportunity and was able to share my Emma’s story and advocate for bereaved families just like mine. I feel so privileged and proud I have created Emma’s legacy. Her story has helped to drive positive change in neonatal palliative care and to let other families know they are not alone. This ongoing connection with my daughter has helped me to grieve and live at the same time and if this feels right for you too.
This is just one of the many wonderful ways the Newborn Intensive Care Foundation supports NICU families. If it feels right for you, I encourage you to make contact.

Over the past 6 years the NICU have developed an Education Workshop for staff that aims to educate and create a supportive framework for staff “Caring for dying babies and their families’. This was made possible by a $40,000 grant from the Foundation. The grant enabled our team to undertake a co-design study. Through collaborating with parents and staff our team has create a video about their experiences that is essential to the workshop. Through the study we had the privilege to work with many amazing parents and parent organisations. Tara was the parent representative on the project team.