Paediatric Palliative Care Stories

We are grateful to the families who have generously shared their paediatric palliative care stories. These stories cover a diverse range of life-limiting conditions and stages of the palliative care journey. Reading these stories may be upsetting, however, we trust they will also help to raise community awareness of paediatric palliative care and assist families who may be having similar experiences understand that there are others who may also be experiencing the same journey.
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    “It’s okay to depend on other people”

    Rudi Greef’s experience of palliative care – as a parent – brought some unexpected light into a highly challenging time. He shares how in-home palliative care helped his son and family, and why he’s so determined to help other families.

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    “When families have good care, they don’t have regrets” – Jenny Hynson shares why paediatric palliative care is so important

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    Cosette Mae Verdu Rose Fundraiser

    Cosette's story is a poignant reminder of the impact one life can have on others and as Jodi perfectly put “Because of Cosette, I will be forever changed”

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    New training to grow communication skills for paediatric palliative care

    In this story, we learn about a passionate collaboration of bereaved parents and healthcare professionals introducing an innovative eLearning program—the Paediatric End-of-Life Care Communication modules.

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    Providing culturally safe end of life care for Aboriginal and Torres Strait Islander children and young people

    The newly launched ‘Working Out What’s Right For Your Child’ discussion starter cards and the ‘Yarning Companion’ facilitator guide have been designed to support healthcare professionals.

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    First report on paediatric palliative care in Australia gives snapshot of impact and need

    For the first time we have data on the delivery of specialist paediatric palliative care in Australia.

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    Carer Gateway - Emotional and practical services and support for carers.

    In this story we share some important information that may be helpful as you navigate Paediatric Palliative care. Carer Gateway provides support to carers during difficult times.

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    “The success of a life isn’t measured by time”

    In this story we hear from Jess, mother of Henry who shares her experience with Paediatric Palliative Care and the support they provided along the journey including making the challenging decision of end of life location.

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    The Paediatric Palliative Care National Action Plan

    “The Action Plan is a roadmap for a national approach that provides guidance and direction on key priorities to improve outcomes for infants, children and young people living with a life-limiting condition.

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    Getting a smile or a high 5

    In this story we hear from Heidi, a Social Worker in Paediatric Palliative Care. She shares her reflection on this important role and the individuals and families that inspire her.

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    Journey to Spirit

    In this story we meet Tanya, an Aboriginal Health Worker working in Paediatric Palliative Care. Tanya shares with us what motivated her to take on this role and the important work she does.

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    Making ripples

    In this story we hear from Alison who shares with us the difficult decision to move from direct clinical care working with children and families to a research pathway to make changes to care at a system level,

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    A bit like gymnasts – A nurse’s reflection

    In this story we hear from Bec, a Registered Nurse reflecting on the important and rewarding role of Nurse's caring for children and supporting families throughout the paediatric palliative care journey.

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    “Light and Glow”

    In this story Preeti, mother of Ziya shares her memories of her daughter and reflects on the importance of making memories.

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    Meet Dr Laura Chapman

    In this story we hear from Dr Chapman about her experience with Paediatric Palliative Care. "I feel very privileged to have some limited experience in the field of paediatric palliative care but would not claim to be an expert by any means. My role as a GP within this highly specialised area is to be the consistent point of contact for…

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    Because of Cosette, I will be forever changed

    In this story Jodie, mother of Cosette generously shares her memories of the palliative care journey, the precious times, the treasured bracelet and Cosette's farewell.

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    A Special Role in Paediatric Palliative Care – our dedicated volunteers

    Paediatric Palliative Care Family Support volunteers provide emotional and practical support to patients and their families.  

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    Meet Angela - Music therapist

    As a music therapist, I am privileged to work with children and young people with life-limiting conditions and their families to explore music-facilitated experiences in meaningful ways where often we can't find the words.

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    Yellow for Evie

    Her rare diagnosis meant that we lived each day in the moment, fully present but also living in between worlds. One foot aware and prepared in the potential of loss, and one in the world of life and the here and now.

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  • shareshare

    Emma

    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…

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    Rio's Story and Rio's Legacy

    As I stood in the emergency department for the third time in a week holding my usually alert 16-month-old who had gastro, I pleaded with staff to consider that he might be really unwell.

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  • shareshare

    As a sibling....

    In this story, the author shares his reaction to the moment he was told - as a teenager - that his sister Dainere only had a year left to live. We hear his first-hand experience of what it was like to help care for his dying sister at home, and the invaluable support Dainere and her family received from the palliative care…

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    The rollercoaster journey..

    In this story Nalani shares the feelings, questions and challenges she faced while supporting her sister through Cancer treatment and palliative care. She reminds us to make the most of the time they have left. Do something together, create special memories to cherish forever.

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    Marc’s Story - His journey with Lissencephaly

    In this story, the Morley family share about the death of their six-year-old son Marc - who lost a battle with Lissencephaly, a rare genetic brain malformation. It wasn’t until the family engaged with palliative care, after avoiding it for so long, that they said: “We renamed palliative care to quality-of-life care, because for us, it was about living, not dying.”

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