Leap of faith
The leap of faith required of the parents of these children – afflicted with complex forms of congenital heart disease, from single-ventricle physiology to heart transplants, strokes and more – was immense.
“Children born with congenital heart disease are often excluded from many recreational programs because they require higher levels of medical care,” explains Dr. Chetan. “Most community programs don’t have the facilities or expertise to care for this patient population. This camp was created to promote independence among campers, encourage new friendships, build confidence and help the kids realize that they aren’t alone; other kids face similar obstacles and challenges.”
One camp family, the Posts, describes the gamut of emotions experienced by most campers and their families in the days leading up to the camp. After enthusiastically registering 12-year-old Austin for Heart Heroes Camp, the family “fell in love with the vision for it,” says Christine Post. However, as packing time drew near, Austin expressed some reluctance and his parents, Christine and Ian, “didn’t require any extra convincing to agree with him. Perhaps it was a better idea to wait another year or two, until Austin was older and more independent,” they thought.
But a caring call from a physician on the Heart Heroes Camp team, asking what she could do to ease the family’s worries about attending camp, prompted a happy change of heart in the Post household and packing eagerly resumed.
An awareness and understanding of that parental anxiety was a key factor in the detailed and thoughtful organization of the camp, all of which contributed to a reassuring sense of confidence felt by campers and their parents.
It was project mentor and Stollery Children’s Hospital pediatric cardiologist, Dr. Jennifer Conway, who emphasized the need to address parental anxiety.
“Jennifer was able to provide a unique perspective on how parents would feel, sending their children away to camp,” says Dr. Chetan. “She advised that we consider medical safety at each step of the planning process and that we seek the input of other specialists.”
That attentiveness to parents’ concerns was duly noted.
“When we arrived at camp to drop Austin off,” says Christine, “we were immediately impressed and reassured to see that we recognized many of the volunteers as trusted medical personnel from the Stollery.”
And while Shannon admits to “watching the Facebook page like a hawk,” she, too, was confident her daughter Maya was in good hands.