LIVING WITH MIRACLES

Sky Works has a long history of making documentaries that have engaged Canadians in building healthy communities. Living with Miracles focuses on the needs of children who may, at one point, have been deemed “miracle babies”. These children are considered medically fragile and depend on assistive technology while living at home with their families.

Over the past two decades, federal and provincial health care policy shifts and systemic restructuring have realigned the primary focus of health care from the hospital to the home. This fundamental change has had a significant impact on patients and families who bear increasing responsibility of providing care. At the same time, medical advances have led to increased infant survival often accompanied by related disabilities. Improvements in diagnostic procedures and life-saving interventions have led to the extension of life for fragile babies and children.

Research has shown that families of children who are designated as medically complex and who are dependant on technology often live with great distress and great love. In Canada, there are networks of professional and family support organizations, disability rights/peer support and advocacy groups. At the same time, the needs of the children and their families are invisible on the level of government health care policies. They also remain largely invisible in our communities. Commissioned reports have paid little attention to children as a special population with unique home care needs, and children have less “power of voice” than other specialized populations.

Living with Miracles gives voice to the children and youth. They represent their concerns and experiences and needs for each other, their care providers, their communities and policy makers. We hope that this film encourages inclusion of children and their families in current and future clinical and policy research so that clinicians and researchers see beyond the silos of their work to consider the needs of the whole child and his/her family; to create opportunities for informed alliances between families, health care providers, school personnel and concerned members of their communities; to serve as an anti-discrimination tool within medical schools, and broader communities across Canada.

The Stories

EMILY CHAN Emily was born in Toronto and spent much of her early life in hospital. From the age of one month to six years, she lived at the Bloorview Macmillan Rehab Centre for Kids. We meet her and her parents when she is 12, now living at home. She is in a motorized wheelchair and breathes with the assistance of a ventilator. She talks about her experience, her strengths and her awareness of discrimination at school and in the community. “I know that people know that I’m in a wheelchair because it’s visible and I’m used to people watching me and wherever I go, but I don’t really care because this is what makes me, me. Maybe on the outside maybe we look different, but on the inside we are all just the same. We all have feelings.” Emily Chan
CATHERINE MONPETIT Catherine is in her late teens and lives at home with her parents and 3 brothers after many long stays at the Montreal Children’s Hospital. She is very intelligent, articulate and thoughtful, provoking important discussion with her family. She struggles with the limitations of a special school setting and is adamant about finding schooling that is challenging and rewarding, in her search for independence and autonomy. “I’ve been very sick for a very, very long time, and the role of parents, it’s to protect and love, and they don’t want anything to happen, and no pain … .of course they are really good intentions when they do that, but sometimes, it’s that I need my independence, you know, to explore myself because if I stay always in the house, in four walls, it’s not going to be good for me. I will not be prepared for the real world….”
THE CAYA FAMILY Gabriella Caya was born with a complex medical condition that resulted in 13 surgeries, many emergency interventions and required daily medical monitoring. Her twin Madison, her brother Alexander and their parents each talk frankly about their experiences of Gabriella’s medical needs. “It’s kind of hard … having a sister like her because she has to go to the hospital so much. And it’s usually Mum that goes with her… I miss them when they’re in the hospital and stuff and, like, whenever she has a surgery or something.” Alexander Caya
A CONVERSATION WITH GABRIELLE'S PARENTS Heather and Mario Caya discuss their experiences of Gabriella’s birth and their family lives built around the needs of all 3 children. “As a parent and adult you understand what they are doing to her and it’s hard to let them do that… you know, it’s bringing harm, you know, the procedures hurt....And you couldn’t hear her because she had a tracheotomy tube so when she cried you could see her tears but… you couldn’t hear her.” Mario and Heather Caya

Supporters

• Bloorview Macmillan Children’s Centre
• University of Toronto
• Sunnybrook Health Sciences Centre
• Montreal Children’s Hospital
• McGill University
• Sick Kids Foundation
• Sick Kids Hospital
• Ryerson University School of Nursing
• Shriners Hospital for Children

We are currently seeking financial support to help bring this project to fruition.