First of its kind website aims to provide resources about palliative care for kids
TORONTO -- When Carla Garrett’s son, Xavier, was diagnosed with a brain tumour as a baby, there were few resources to help her understand what it meant to navigate palliative care for a child.
Now, Garrett, along with other parents who have lost their children, care providers and medical experts, are launching a website designed to support parents going through the terrifying ordeal of caring for a child who may have limited time.
Garrett told CTV National News that when Xavier was diagnosed with an incurable tumour, it was difficult to understand what it all meant.
“It’s really hard to process that information,” Garrett said. “It just doesn’t sink in. And it really didn’t sink in for me until I had another mother explain all the supports we could get with paediatric palliative care, if we accepted the care.”
Xavier, who died a few years ago just shy of his eighth birthday, had a rare form of brain cancer which had survival rates just between five and 25 per cent.
His parents spent years travelling a painful and often lonely journey through the medical system in search of the best care for him — and they are far from alone. In Canada today, as many as eight thousand families are caring for a seriously ill or dying child.
The aim of this new website, is to provide those families with support that wasn’t accessible back when Xavier was first diagnosed.
Called ‘caringtogether.life’, the website is the first of its kind for child palliative care, based off the model of the adult version for Canadian Virtual Hospice, which provides information and support on palliative care and advanced illness for adults.
“I want these families to know that there are supports available, that there is education available, that the ‘what if’ questions that many of them are asking, typically late at night when there is nobody there to turn to, they can go online and get those answers and find out who are the people locally that they can connect to to have further conversations on this,” Dr. Adam Rapaport, a pediatric palliative care specialist with Sick Kids Hospital, told CTV News.
The website aims to serve as a hub to connect people with services and other families who may be going through many of the same challenges. It also has pages walking families through the impact on members of the family outside of the child who is suffering, as well as resources on how to plan for end of life care and the grieving process.
For the Garrett family, who had navigated much of Xavier’s illness alone, there’s hope this online resource will help open hearts and minds to the concept of palliative care for children.
In a post entitled ‘Xavier’s Story’ on the new website, Garrett details how seeing the word ‘palliative’ written down on a piece of paper about her then eight-month-old baby was confusing and disorienting, making her think that he was already at the end of his life.
But now, she wants to help others understand that it’s about ensuring your child has the best quality of life for however long he is with you.
“Palliative care doesn’t [just] mean end of life care, it is something you can have as part of your entire journey of the child’s life from the beginning to the end,” Garrett told CTV News.
And although it’s a journey that will always be a difficult one for families, now it comes with a little more help and support.