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 OrganisationsWe 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.
In this module we hear from Tara, Melissa, Priyanka and Rachael and Jonny. They will each share with you the top things they want you…
ViewThere are four sections in this module – Bonding and creating memories with your baby during pregnancy, Continuing your pregnancy in uncertainty, medically interrupted pregnancy…
ViewIn this module we hear from Tara, Melissa, Priyanka and Rachael and Jonny on how they used their voices to advocate for their babies and…
ViewHaving an infant with a life limiting or terminal diagnosis is an unfathomably difficult time where you need family and friends to rally around and…
ViewIn this module you hear from Tara, Melissa, Priyanka and Rachael on their experience with counselling during their pregnancy, whilst their baby was alive and…
ViewGrief 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…
ViewIn this module the families talk about the anxiety, the hard thoughts and the guilt and regret that they had after finding out that their…
ViewIn this module you hear how Tara, Melissa, Priyanka and Rachael and Jonny bonded and made lasting memories with their children. They also share how…
ViewIn this module you hear how Tara, Melissa, Priyanka and Rachael and Jonny navigated their everyday life whilst caring for their child has a life…
ViewIn this module we hear from Jonny who shares the treasured moments he spent with his daughter Mackenzie, the memories they created, the time they…
ViewWe recognise and acknowledge those who are working through Sorry Business, Sad News, grief and bereavement and offer our condolences and support.
Aboriginal and Torres Strait Islander peoples are advised that this website may contain images, videos and voices of people who have passed on. Some of the content and topics covered might also cause distress. You are welcome here, and we want you to feel safe and take care.
If you find that you need support please reach out to 13YARN on 13 92 76, Grief Australia, Grief Line on 1300 845 745, or Lifeline on 13 11 14.
Palliative Care Australia is located in Canberra. We acknowledge the traditional custodians of the surrounding land and waters, the Ngunnawal and Ngambri Peoples and pay our respects to Elders past and present. We extend that same respect and acknowledge the continuing cultures and contribution of Aboriginal and Torres Strait Islander Peoples across Australia.
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