Turning Heartbreak into Change for Bereaved Families

Before Sage was born, his parents had dreamed of him for years. Their hearts were already full of love and plans for the life they would share. When Sage was born sleeping after a full-term pregnancy, their world changed forever. In those first precious days, surrounded by love and loss, they found strength in small moments, the scent of jasmine flowers, kind words from caregivers, and the time they were able to spend with their son thanks to the CuddleCot. Today, Sage’s family continues to honour him through bereavement care advocacy, compassion, and a determination to improve bereavement care for families across Australia. Their story is one of love, courage, and the power of using grief to create meaningful change.

• Can you share a little about your journey with baby Sage and what those first days with him were like for you and Aiden?

Our journey with Sage begun many years ago (before he existed), when we began dreaming of a future when “Sage” would be here. He passed away after experiencing a full term pregnancy filled with dreams, love & presence. Our journey still continues, in ways I’d never imagined. Our journey now looks like advocating where we can & finding ways to keep his memory alive. The first days with Sage are the reason behind our advocation. They were filled with distressing care due to lack of bereavement education or policy/procedures around baby loss. 

• What moments with Sage stand out most strongly in your memory?

I’d say the moments that stand out to me depend on the time, at one point all I’d think of was the positive heartwarming moments. Since my advocacy, which included writing my patient story for NSW Health, I’m flooded with many traumatic moments. I’d like to touch on my positive ones that shape who Sage is. I remember rubbing jasmine oil into his skin & filling his CuddleCot with the first jasmine flowers of spring. This has created a strong scent association for me. I remember the doctor holding our hand as we were rolled out the ambulance. I remember our baby being spoken to like any other baby & told he was so beautiful. I remember our local midwives slowing down to chat with us. I remember playing our labour playlist on repeat and rearranging Sages flowers in his bassinet. I also remember the feeling of absolute privilege that I got to give birth to him. I remember the love expressed to him at his funeral & each person picking a card each that I’d pre made of a word they’d take forward for him. Such as “awe & wonder in the little things”, “laughter” or “divine surrendering”. All my favourite memories are held within our local hospital where we transferred back to & received great care from. 

• How did the experience at the hospital shape your perspective on bereavement care?

Our experience was filled with the contrast of good and poor care between different hospitals, which gave me the ability to see right from wrong. Working as a nursing assistant at the time, bereavement care wasn’t new to me. I kept thinking “this would never happen where I work” and picking up on differences, such as the fact that loved ones of those who’d receive palliative care at my workplace would receive meals. This was an experience that also shaped me to hold even greater compassion, communication & confidence providing this care myself (when I did return to work).  I now work in a different industry but can still use my advocation skills. Our experience of bereavement care & later my research into the established standards, such as the CASanD guideline for Australia and New Zealand, made me rethink our experience and want better for those in hospital today, tomorrow & every day that this occurs. It made me strongly passionate and relentless to see change through partnership rather than a you vs me situation, and so far this strategy has worked successfully. 

• You’ve spoken about some of the language and actions from staff that felt distressing. What would you like healthcare professionals to better understand about supporting families in those moments?

It’s important to understand there’s nothing you can do to fix a parent’s grief. There’s a term called “toxic positivity” which essentially means that when we try to be positive, we dismiss someone’s feelings/circumstances and this can create negative feelings. Hence the term “toxic positivity”. Try not to be that person, no matter how well intended you are. All you can do is be there, validate their experience, respect their choices, even if it’s not the version you’d imagined – such as someone choosing not to see their baby. Never force something on someone else, no matter how great you think it could be, as this can end up being more traumatic for them. Most of all, know what options you have to offer and GIVE CHOICES! Be educated, most families come into this completely unaware of their options, it’s your job to support them. Offer them to take their baby home in the CuddleCot cot, take pictures for them to collect at a later date IF they’re ever ready to see their baby, advocate for Dad to be offered a meal – be the squeaky wheel within the system if you think it could be better. I also advocate for CuddleCots free 24/7 accessible, self-paced online bereavement care modules for maternity staff. It’s a great resource to build your foundation of knowledge and skills, particularly if your workplace uses CuddleCots. Lastly, if you’re not sure, ask! 

• What does dignified, compassionate bereavement care look like to you?

Dignified, compassionate care means upholding outmost sensitivity to the baby, parents & wider family. Dignity means parents having choice and control, whilst baby is treated respectfully. This means treating the baby with warmth, care and a sense of normality, much how you’d care for other babies. It means avoiding covering the baby’s face, especially in the black leather portable carry bag Sage was transported in. Rather a dignified compassionate approach for transportation would be to use a blanket up to baby’s chest, using a normal bassinet or CuddleCot on wheels, giving the family time to have a slow goodbye, gently seeking permission before taking baby, referring to their baby using the parents preferred language and letting the parents know “Your baby is safe with me. I’ll take care of them. As soon as you want them, just let me know and I’ll bring them right back”. This will look different for each family, particularly in Australia where we have a wide array of cultures, and therefore a strong need for awareness and competence in creating cultural safety for every family. 

• Can you tell us about the work you are doing to transform the standardisation of bereavement care? 

Yes! We have many standards and guidelines for bereavement care within pregnancy and infant loss. We have hospitals operating without them, with no education or policy to pillar the care they provide. In Australia bereavement care within midwifery degrees is not mandated, despite our Australian statistics of an average of 6 stillbirths per day, a miscarriage every 3.5 minutes and 3 children dying each day before reaching their first birthday. What I’d like to see is a bridge between our established knowledge/research and the actual practice within hospitals, as well as consumers taking an active role in closing this gap. My journey of this begun with making a complaint to our healthcare complaints commission with a strong request for a bereavement care policy to be created with particular suggestions – one was for bereaved Dads to be offered meals & for all staff to attend the free online CuddleCot modules. The hospital agreed, worked on it for a year, then gained my feedback on it. NSW Health also took my patient story to store in their data base, it’s been read aloud to staff at team meetings among the Mid North Coast and used in bereavement care education provided by Bears of Hope. It’s our hope this will assist to close the gap between the differences in care among various locations. 

• You’ve created a strong online community since losing Sage. How has connecting with families and healthcare professionals around the world shaped your journey and your advocacy?

I shared quotes from my NSW health patient story on my instagram which increased the amount of messages I would receive from other parents with similar experiences. Their experiences became my duty of care and I had more phone calls to make and emails to send. All of a sudden it wasn’t just my story anymore but the story’s of many other families who deserved to be advocated for. It especially saddened me to see loss’s had come after mine at the same hospital, having similar experiences – it made me feel like I’d failed others by not seeing change soon enough. So I continued speaking out & raising these issues. In the beginning I felt dismissed and it was hard to find the right person who would listen and actually had the power to make change. Eventually I began liaising with the district maternity manager, who became touched with not only my story but the story’s of the women who were shared through me. One family were able to locate the crematories of babies they’d lost track of due to lack of staff communication. I got to read about “Myles family” taking their son home with a CuddleCot, which in turn sparked a new policy for taking your baby home to grieve. “Hazel’s Mums” resources she created to help others have been taken on board by our district. A local photographer who reached out to me on instagram was able to be a resource due to heartfelt not servicing our area. Many peoples stories who’ve chosen to stay anonymous have helped shaped the new policy. The work I’ve done has simply been making requests for bereavement care policy’s and education – I’ve now seen both of these done, with a commitment to continue their bereavement education, so no staff or family are given the chance to be left behind. On another note, The Ministry of Health has just released their own pregnancy loss guideline, so our district is currently ensuring their guideline is in line with it – although we think is it better due to the strong amount of consumer input that went into it. These policy’s and education have been profoundly impacted by my small (but mighty) online community. 

• What has surprised you most about the response to your story?

I guess in the beginning I initially worried my story was being shared with no goal or sight of how it would create change. The outcome of sharing was that I was filled with equal hope and passion. Now people were messaging me telling me they had similar experiences, some of them sharing how they’ve gone on to do inspiring things – like becoming midwives themselves, studying further to support those grieving, speaking out and raising awareness – the list goes on. 

• How does these guidelines support healthcare professionals as well as families? 

These guidelines assist healthcare professionals to provide care with confidence – to babies and parents. It touches on knowledge and education. It gives them resources for further training. It supports them to do their job as best as possible. It also comes with a complimentary check list that staff can use with everything summarised to ensure they don’t miss any gaps of care. Which upholds their communication between shifts, therefore making their job easier. 

• In Sage’s memory, you donated a CuddleCot to King Edward Memorial Hospital. What did that mean to you, and what do you hope it brings to other families?

It is super special to have donated a CuddleCot in memory of Sage. The journey of fundraising was heart touching and it felt incredibly supportive to have people donating towards it – we are forever thankful. King Edward Memorial Hospital needed to use the cuddle cot the same day it arrived. I hope it brings families precious memories and that when they read our son’s name, they know they aren’t alone. 

• Why is access to tools like the CuddleCot so important for families navigating loss?

It’s important as the access to a CuddleCot allows families choice. CuddleCots allow the option for no morgue usage, dignified transportation and something I’ve learnt, is the ability to hold or lay with your baby whilst having cooling at the same time. It is also amazing that having access to a CuddleCot means you have the right to take your baby home. I believe having a CuddleCot means we can pillar great bereavement care, it’s a resource that allows for better care. 

• You’ve also spoken about staff training. How do you hope your advocacy influences the way hospitals prepare their teams to care for bereaved families?

I hope hospitals will participate in regular bereavement care training for various staff – paramedics, emergency staff, social workers, obstetricians, midwives, etc. That training is individualised to the hospital and the improvements they require & the policy’s they hold. I endeavour to ensure that consumer input is always considered and invited. At this rate, our district is committed to ongoing education and we’re very happy to see it. 

• Looking ahead, what change would you most like to see in bereavement care in Australia?

If I had to pick one, it would be the implementation of mandates. I’d like to see strict education requirements for university’s to provide in-depth bereavement education. I’d like to see maternity services mandated to provide this education annually or as needed (for example, when onboarding new staff). The stillbirth centre of excellence is the gold standard and it would be great to have their guidelines studied by students and put into practice by graduates. 

• If you could send one message to families who are just beginning their own loss journey, what would you want them to hear?

It’a okay to fall apart. I felt like I had to hold it together and be strong. Each time someone told me how strong I was, it made me feel I needed to hold this facade. I wouldn’t cry and I would say lots of positive stuff. To which I’d get more “you’re so strong” comments. It’s okay not to be okay. Sometimes it takes greater strength to process your feelings and sit in your truth. 

Sage’s story has already touched countless lives, from families navigating loss to healthcare teams learning how to care with greater compassion. His legacy continues through advocacy, education, and the CuddleCot donated in his name to King Edward Memorial Hospital, which was sadly needed on the very day it arrived.

Through their work, Sage’s family reminds us that every act of care matters, every choice given to parents makes a difference, and every baby’s life deserves to be honoured. Their message to families facing loss is simple but powerful: It’s okay not to be okay.

Register for Free Online Bereavement Care Training at: cuddlecot.getlearnworlds.com

Ask a question at: info@cuddlecot.com