Living With Miracles

Sky Works has made many documentaries which explore ethical, social and economic issues related to our changing health care system. The first film in the health care series, To Hurt and To Heal, released in 1984, explores issues in the care of very premature and critically ill children. We are continuing this exploration of these issues by focusing on the needs of children who may have been “miracle babies” but who now remain medically fragile and technology-dependant, living at home with their families.

Medical advances have led to increased infant survival accompanied by disabilities that would not have had the opportunity to develop in the past. Improvements in diagnostic procedures and life-saving interventions have led to the extension of life for fragile babies and children. The terrain that encompasses clinical issues as well as the physical and psycho-social experiences of children and their families shifts with each new medical and technological development. Each shift - be it large or small - can greatly affect the quality of life for the child and family members.

Over the past two decades, federal and provincial health care policy shifts and systemic restructuring have realigned the primary locus of health care from the hospital to the home. This fundamental change has had a significant impact on families who take on increasing responsibility to provide care. Mothers and fathers are expected to provide support to their child that would previously been the responsibility of registered nurses, repertory therapists, physiotherapists, occupational therapists, and nutritionists. In the best situations, families have the support of committed health care professionals. In more difficult circumstances, limited resources lead to gaps in services and support, and greatly effect the quality of life for each family member. In all cases, parents, children, health care providers struggle to do their best to maximize and grow existing resources.

The research available to us has shown that families of children who are medically fragile and technology-dependant often live with great distress and great love. They experience both the joy of their children’s lives and the huge responsibility of caring for their fragile children. Many have learned that it is not as simple as to declare that being at home is good, and that institutional care is bad. For most families and children, there is no simple preference. Families live with emotional strain, the anticipation of loss, and longing for medical, emotional and financial stability. At the same time, many parents and their children develop well-honed wisdom and strategic survival skills. They have learned to manage institutional and government practices and policies; they may have formed substantial bonds with health care providers and organizations. They may have reached out to community and extended family for support along the way. It is certainly not an easy or predictable road. Many children and families are vulnerable to isolation, discrimination from neighbours, schools, and insensitive communities. Many struggle with economic crisis, as one parent relinquishes employment to care for a child.

These issues and realities live out locally, regionally, and nationally. In Canada, there are active 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 not adequately visible at the level of federal and provincial health care policy. Many needs and concerns also remain invisible in our communities. The Canadian Children and Youth Home Care Network research group has documented that while there is a growing population with a life-long need for homecare, children and youth are not on the national public policy home care agenda. 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.

Our project addressing medically fragile, technology-dependent children has several goals:

• To create an opportunity for families with technology-dependant children to connect with each other across the country, to provide mutual support, home and community survival strategies, and lobbying plans.
• To give voice to the children themselves so that they may represent their concerns, experiences and needs to each other, their care providers, their communities and legislators
• To support health care personnel to see beyond the experiences of their daily work environments to consider the larger social and economic implications of health care for technology-dependant kids and their families
• To create opportunities for informed alliances between families, health care providers, school personnel and concerned members of their communities
• To encourage and equip these allied groups to put the needs of children who are technology-dependant at home, and their families, on provincial and federal policy agendas so that their needs and their contributions will be recognized across the country
• To serve as an anti-discrimination vehicle within medical schools, and broader communities across Canada.

Our organization envisions its continued work with children and their families as a focus for positive community change. Our job is to work with children, families, health care professionals and policymakers to ensure that they all are participants in the development of remedies that will benefit us all.

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.