The journey of parenthood can be filled with joy, excitement and anticipation. However, sometimes unexpected challenges arise, requiring families to navigate uncertain and difficult paths.
Parents Marie and Wes Toews received the heartbreaking news of a Trisomy 18 diagnosis during Marie’s pregnancy in 2022. Trisomy 18, also known as Edward’s syndrome, is a chromosomal disorder caused by having an extra copy of chromosomes in the cells. In their time of need, Canuck Place Children’s Hospice emerged as a steadfast support for the Toews, providing compassionate complex care and helping them create cherished memories with their daughter, Sophia.
Canuck Place is the sole provider of pediatric palliative care in B.C. and the Yukon. They offer a wide range of services, including medical respite care, pain and symptom management, grief and bereavement counselling, recreation and music therapy, and end-of-life support. Canuck Place care helps improve the quality of life for children and their families, by easing suffering and providing physical, emotional and spiritual support during difficult times.
The news of Sophia’s diagnosis plunged Marie and Wes into a world of uncertainty. However, their introduction to Canuck Place nurse practitioner, Camara van Breemen was life-lifting for them. Van Breemen’s calming presence, knowledge and experience absorbed some of their shock and helped prepare them for both the possibilities and hopes. Together, they created a unique care plan that accurately reflected Sophia’s diagnosis and the family’s values in caring for her through end-of-life.
Advanced care planning is a crucial aspect of Canuck Place’s support for families facing life-threatening conditions. Canuck Place nurses and physicians recognize the importance of addressing the complex medical decisions that arise throughout the journey of a child’s illness. Through advanced care planning, Canuck Place works closely with families, like the Toews, to develop personalized care plans that align with their values, preferences and goals. These plans encompass not only medical decisions but also emotional, spiritual and practical considerations. By engaging in open two-way conversations, Canuck Place helped the Toews feel more empowered to make informed choices about Sophia’s care and guided them to focus on cherishing every precious moment together.
van Breemen and the Canuck Place clinical team provided the Toews with information and education about Sophia’s condition as well as available resources on how to take care of her medical needs. Counsellors and support staff offered emotional and psychosocial support to help them navigate their feelings, fears and hopes, while grieving the loss of their sweet Sophia. Canuck Place nurses and physicians also worked closely with the Toews to assist in finding the necessary medical support in their hometown on Vancouver Island. Canuck Place’s community-based care approach and advanced care planning ensured that the Toews family could receive the support they needed at home, in the hospital and even virtually, without any financial burden.
“We visited Canuck Place for medical respite care while they taught us how to care for Sophia,” explains Marie. “This skill-building allowed us to help Sophia thrive more at home, which was very important to us, and the Canuck Place team continued to support us in our home for the rest of Sophia’s life.”
Dealing with a life-altering diagnosis can be an overwhelming and isolating experience. The Canuck Place counselling team recognizes the importance of emotional support for Canuck Place families like the Toews, offering guidance and solace throughout their grief journey.
Sophia’s life may have been short, but her impact was profound. Canuck Place recognizes the importance of creating meaningful moments and memories for families on program, ensuring a child’s life would forever be cherished. Canuck Place recreation therapists took special care to capture precious moments through making foot molds and a pendant with Sophia’s footprint, allowing the Toews family to cherish and hold onto these memories for a lifetime.
Canuck Place guides families through the darkest of times and helps them find solace, strength and joy along the way. Through their comprehensive care, emotional support and commitment to creating precious memories, Canuck Place care has a profound impact on families like the Toews, facing unimaginable challenges.
“When we first got Sophia’s diagnosis, the weight of responsibility to navigate that on our own, was a lot,” Wes explains.
“What we quickly came to experience is that the support of Canuck Place allowed us to be present during our experience and care for ourselves and our daughter as her parents, rather than feeling the enormity of her care or decision making alone.”
The story of the Toews family is just one among many that illustrate the transformative impact Canuck Place has on families facing similar circumstances. Canuck Place continues to be a lifeline for families who find themselves in the midst of medical complexities, providing comprehensive care and support from diagnosis and beyond. By offering compassionate care tailored to the unique needs of each family, Canuck Place ensures that no family walks this challenging journey alone.
The services provided by Canuck Place are made possible through the generosity of donors and supporters. You can make a tangible difference in the lives of families like the Toews by donating today at canuckplace.org.
The Toews family, who have experienced first hand the impact of Canuck Place care, will share their inspiring story as family speakers at the Gift of Time Gala presented by Nicola Wealth on Sept. 23. All gala proceeds directly support Canuck Place care. You can support by making a donation at thegiftoftime.org.
A version of this story appeared in The Vancouver Sun on September 11, 2023.