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.
Within 48 hours, we were in ICU, and ten weeks later Rio died of a never-before-seen arterial condition.
Despite five major surgeries, including two amputations, medical staff were helpless to cure his condition.
Myself, my husband and our then four-year-old daughter Remi lived between ICU, Renal ward, and out of overnight bags for 42 days. In the background of our hospital stay were people from paediatric palliative care. We had little to do with them and felt they were our last resort. It seemed that engaging their services would mean giving up on Rio. If only we had known then, what we know now.
Rio spent his last three weeks at Bear Cottage in Manly, NSW. We were one of the fortunate families that got the opportunity to be nurtured, guided and supported through the toughest goodbye we would ever say. The staff at Bear Cottage are now our extended family, and the service they provided to our whole family unit was priceless.
Rio passed away with “mummy” and “dad dad” on either side of him after spending days in the garden, feeling the fresh air, being alongside the ocean and watching tv with his adoring big sister. We are so thankful for our end-of-life care.
Yet at Bear Cottage, we met families that were on waiting lists for respite, some that had children who would outlive the 18-years-and-under requirements for paediatric palliative care and some fearful that they would not be able to manage the travel to Bear Cottage when their child’s last breaths were approaching.
Moved by our own experience and witnessing the struggles of others, my husband Ryan and I decided to try and be a voice for these families, sick children, siblings and grandparents.
We started to see more clearly the gaps in the palliative care model, the lack of funding and awareness, and the incomplete way palliative care is often perceived in the community. There is a great need for more paediatric hospices and a stronger palliative care presence in our paediatric hospitals.
There is an opportunity to dispel fear like we experienced, through early engagement and education and to proactively support people through their child’s last days, in their grief and beyond.
Ryan and I started a charity called Rio’s Legacy and we are honoured to be involved in this palliative care initiative and to share hope with those families with darling children like our Rio.
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