Palliative care for children: new website provides resources
TORONTO – When Carla Garrett’s son Xavier was diagnosed with a brain tumor as a baby, there were few resources to help him understand what it means to navigate palliative care for a child .
Now Garrett, along with other parents who have lost their children, caregivers and medical experts, are launching a website designed to help parents get through the terrifying ordeal of caring for a child who can have little time.
Garrett told CTV National News that when Xavier was diagnosed with an incurable tumor, it was difficult to understand what it all meant.
“It’s really hard to process this information,” Garrett said. “It just doesn’t permeate. And that really didn’t penetrate for me until I asked another mom to explain all the supports we could get with pediatric hospice care, if we took care. “
Xavier, who died a few years ago just before his eighth birthday, suffered from a rare form of brain cancer with survival rates between 5% and 25%.
His parents have spent years on 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, up to eight thousand families are caring for a critically ill or dying child.
The goal of this new website is to provide these families with support that was not available when Xavier was first diagnosed.
Called ‘caringtogether.life’, the website is the first of its kind for hospice palliative care for children, modeled after the adult version of Canadian Virtual Hospice, which provides information and support on hospice and disease. advanced 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 ask, usually late at night when there is no no one to turn to, they can go online and get those answers and find out who the local people are that they can connect with to have more conversations about this, ”specialist Dr. Adam Rapaport told CTV News. pediatric palliative care at Sick Kids Hospital.
The website aims to serve as a hub to connect people with services and other families who may be facing many of the same challenges. It also contains pages explaining to families the impact on family members besides the suffering child, as well as resources on how to plan for end-of-life care and the grieving process.
For the Garrett family, who lived through much of Xavier’s illness on their own, it is hoped that this online resource will help open hearts and minds to the concept of palliative care for children.
In an article titled “Xavier’s Story” on the new website, Garrett explains how confusing seeing the word “palliative” written on a piece of paper about her then eight-month-old baby was. disorienting, making him think he was already at the end of his life.
But now she wants to help others understand that it’s all about ensuring your child has the best quality of life for as long as they are with you.
“Palliative care does not [just] mean end-of-life care, it’s something you can have as part of your entire journey of the child’s life from start to finish, ”Garrett told CTV News.
And while it will be a trip that will always be difficult for families, it now comes with a little more help and support.