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When my husband and I found out we were pregnant with our first child we couldn’t be more excited. I purchased numerous “baby how to” books and read them cover to cover. I had a birth plan, I registered for breastfeeding classes and researched baby safe products. My husband painted the nursery, put together the cot, installed the baby car seat and had it checked by professionals. I never missed an antenatal appointment or baby scan. We knew everything there was to know, we were all ready – until we weren’t…

Emma was born at 38 weeks, a fabulous 3kgs, 10 fingers, 10 toes – but not breathing. She was blue, limp and needed resuscitating. Due to the incredible skill and a whole lot of luck, the neonatal team were able to get her heart started and she was placed on a ventilator and transferred to the hospital’s Neonatal Intensive Care Unit (NICU). Tests and observations revealed that Emma had suffered from oxygen deprivation to her brain during birth, also known as Hypoxic Ischemic Encephalopathy (HIE). As a result, she was unable to protect her airways and if she managed to survive coming off the ventilator, she would have a severely shortened life expectancy. This began our paediatric palliative care journey.

At the age of just 10 days her ventilator was removed, and the Neonatologist held our hand and explained that the signs she was showing us meant that it was likely she may only survive hours or days at the most. Emma had let us know she was getting ready to say goodbye. At 15 days of age, Emma died in our arms as we sang her favourite song to her and read her favourite book. She was warm, pain free and lovingly cradled.

After my daughter died, I had two very strong, almost innate urges. The first was that I wanted her to be remembered. She is my baby, she existed, I am 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 did. After Emma’s first birthday and first anniversary of her death I started to look at ways that I could help fulfill these two unmet needs.

I connected with the hospital and Neonatal Unit where Emma had lived most of her little life. I found that they had a Family Centred Care Advisory group that was made up of varied health professionals and parents. They also had two positions on this group for bereaved parents, I applied and was successful in gaining a position. I have been fortunate enough to serve on this group for the past 10 years advocating for the needs of families just like mine.

I also reached out to Palliative Care Australia and their Paediatric Palliative Care team and found that they had some research projects that needed consumer voices. These included opportunities to provide written and verbal feedback on my experience as a Paediatric Palliative Care parent and to also share my daughters story, and her name. Needless to say; I jumped at the opportunity.

Although my daughter is still gone, I feel so privileged and proud of her little legacy. Her story has helped to drive positive change in paediatric 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, then I would encourage you to get in contact with the Paediatric Palliative Care Project Team.