Sharing our experiences of Caring for an infant with a life limiting or terminal diagnosis – an educational series created by parents for parents

We are so sorry that you have found yourself on this page. We too are families that have had a baby with a life limiting or terminal diagnosis. There is nothing we can do to change those heartbreaking words.

We hope that by sharing with you our children’s stories, our coping strategies, what’s helpful, ways to bond with your baby and make memories, answering some of those questions and hard thoughts that you might find some strength, some light, some hope and less fear of what paediatric palliative care looks like for your family.

The following modules developed by Tara, Melissa, Priyanka and Rachael and Jonny include videos, podcasts, reflective journals and videos developed generously by several health professionals.

Take care of yourself as you watch, hear and read these stories. Don’t forget your health care team are there to support you.  We have also developed a list of support organisations that you may find helpful.

Support Organisations

You are not alone

We extend our heartfelt gratitude to Gately & Annika DeHoog for graciously providing the stunning images featured throughout this resource. Their visually captivating work beautifully aligns with our topic, and we deeply appreciate their generosity in allowing us to incorporate these visuals into our resources.

  • Theme 6 – Grief and loss

    Grief and loss doesn’t start after your infant has died, it starts when you find out that your child has a life limiting or terminal…

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  • Theme 7 – The roller coaster of emotions

    In this module the families talk about the anxiety, the hard thoughts and the guilt and regret that they had after finding out that their…

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  • Theme 8 – Bonding and Making memories

    In this module you hear how Tara, Melissa, Priyanka and Rachael and Jonny bonded and made lasting memories with their children. They also share how…

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