04/05/2026
Paediatric palliative care.
It doesn’t mean what you think it does.
Payton has been a palliative patient essentially her entire life.
When they first walked into our hospital room at 4 months old I was devastated because what I knew about palliative care was…devastating.
But palliative care for child looks different.
They don’t come at end of life , they come at the beginning of a diagnosis, managing life long complex conditions.
They help parents navigate the hard impossible decisions.
They stand by your side and advocate when your voice feels unheard.
Our most recent stay, I felt unheard with some concerns so I reached out to her palliative team…
That next morning they were bedside putting me at ease, asking if they needed to advocate for anything else.
Palliative care sounds scary in the beginning.
But they are THAT team.
The ones you can call, text or email at any hour knowing you’ll get a response.
I’ve said it to many parents over the years walking into the palliative life and I’ll say it again,
If there is any team you want your child to have,
they are it.
