It’s a little-known fact that congenital heart defects affect one out of every hundred infants in Canada. Specialty camp opportunities are numerous for kids with special needs, or for those affected by diabetes and cancer, and although the disease is so prevalent, there is little support for congenital heart patients and their families. It was on this basis that Dr. Ariane Marelli of the Maude Unit at the Royal Victoria Hospital, along with a group of ambitious volunteers, took on the task of creating the Coeur à Coeur Congenital Heart Camp. Open in 2006, it was the first ever of its kind in Canada.
Leila Basen, one of the volunteers that helped organize the camp, has a daughter born with congenital heart disease.
“When my daughter was born, I was told she had congenital heart defects and a 15 per cent chance of survival. Before she even went in for surgery, I was given a pill to dry out my breast milk, as if she was already dead. In those difficult times, it would have helped to connect to a community of parents and patients who knew what I was going through,” Basen recalls. “My daughter is now 23. She was one of the first in Montreal to survive the surgery she had when she was two days old.”
Talking with individuals who have overcome similar difficulties can bring hope to those who are just coming to terms with the dangers of the illness. Such success stories as that of Basen’s daughter are shared at the camp. It serves as an inspiration for young children with congenital heart defects to meet a healthy and strong 23 -year-old who has survived their condition. With three open heart surgeries under her belt, Basen’s daughter gives the kids a chance to see, firsthand, the light at the end of the scalpel.
Dr. Karine Auclair, professor of Chemistry at McGill, attended the camp last year with her young daughter. Dr. Auclair was born with congenital heart defects, and was told she could not have kids. However, despite the odds, she birthed a healthy child and now serves as a role model for other congenital heart patients wishing to have children.
Another frequenter of the last year’s Coeur à Coeur, Christina Philippouci, a student at John Abbott College afflicted by congenital heart defects, was given a new perspective. “In all honesty I really did think I was alone, or at least one of the few that were in my shoes. This camp was such a positive experience for me, it made me accept my scar.”
For more information please visit http://maude.mcgill.ca/en/news/news_camp.php.