Why paediatric palliative care?
When you get a terminal diagnosis all the colour drains out of your world. Its true. The world becomes black and white; sometimes stained with various shades of grey. But there is no colour.
When we first set up the Foundation we knew we wanted to do something to help other families like ours. Families who had been given a diagnosis that no parent ever wants to hear. Families who have been told their child is going to die and that there is no cure, no hope, no chance. Honestly that is how it feels when you hear those words. Anyone who has ever had a life changing diagnosis can attest to that.
When we first heard the words paediatric palliative care, like most people, we associated it with giving up, with dying. But we were heartened when we learnt that many young families are connected with the palliative care teams for years. That the focus is not on impending death but on quality of life and how it could be enhanced.
‘What does Lily like?’
Sitting in the emergency department at the Royal Children’s Hospital I was caught of guard by the question. It was the first time a doctor had really asked about what she liked. Mostly we were talking about seizure control, muscle tone, head control and hypotonia.
‘Um, Lily likes music’ I replied,
‘Ok great, lets see what we can do’
And just like that began the beginning of our music therapy journey. It was funded by Victorian Paediatric Palliative Care Services and it was wonderful. It truly enhanced Lily’s quality of life and created really wonderful lasting family memories. It helped bring joy to our home every single week.
Our journey with paediatric palliative care went on to see us supported to keep our darling girl at home because we truly felt that was best for her, and to travel and explore Australia and New Zealand with her. After she died, the support didn’t end – with Very Special Kids providing us with a Cuddle Cot and space to grieve. We continue to receive ongoing bereavement support from them today.
And so when it came to thinking about how we could help others we realised we wanted to highlight the work that goes on in this space. As time has gone on we have refined our approach and three key objectives have emerged.
1. To draw awareness to what paediatric palliative care is. Specifically that it is about enhancing quality of life and making the most of the limited time that you might have with a baby or child
2. To raise funds for those people and organisations who work daily to enhance the lives of terminally ill children and their families
3. To talk about the reality of grief, death and child loss through sharing stories, to help break down taboos around baby loss and society’s aversion to talking about it.