August 22, 2017
Stella Cockett, left, and Danielle Tailleur — representing the Canadian Congenital Heart Alliance and the Children’s Heart Society respectively — joined AHS staff and physicians to present this year’s Adult Congenital Heart Education Forum at the Mazankowski Alberta Heart Institute.
Story by Sharman Hnatiuk | Photo courtesy Pamela Heggie
As a patient with congenital heart disease, Danielle Tailleur has traversed the healthcare system and speaks from personal experience. Looking back, she wishes there had been more help during her transition from pediatric to adult care.
“When I turned 18, I felt like all the supports I had grown up with were gone — and the staff and physicians I was used to were only available for pediatric patients,” says Tailleur, 34. “I had to learn to navigate a whole new system with all new faces as an adult. I hope my experiences can help someone else have an easier time of changing systems.”
Earlier this year, Tailleur spoke at the Heart to Heart: Congenital Heart Education Forum, a day at the Mazankowski Alberta Heart Institute’s (Maz) designed to provide support and educate adults about living with congenital heart disease.
Speaking as a member of the Children’s Heart Society, Tailleur joined a program packed with physicians and staff who support the Maz’s Northern Alberta Adult Congenital Heart (NAACH) Clinic — all who volunteered their time to share information and personal experiences. Topics ranged from staying fit for life, what to expect when you’re expecting, living with blood thinners and to learning about what cardiac tests can tell one about their heart, to name a few.
“We want to empower patients in our clinic to take charge of their heart health, and we felt there was a real thirst for more information about their disease,” says Pamela Heggie, Clinic Nurse Coordinator for the NAACH.
“Rather than have our patients rely on finding information on the Internet, we brought together a group of specialists to present on a wide range of topics and answer questions from over 50 patients and family members impacted by adult congenital heart disease.”
For Tailleur, the opportunity to meet and speak with other participants proved valuable. She recalls talking to one participant who had recently had heart surgery, but didn’t have any relationships with other patients like her, or connection to a heart association.
“Sometimes you just want to talk with another patient who can relate to you,” says Tailleur. “An education day like this helps build stronger relationships not only with the staff and physicians presenting, but also with patients who can be a resource and source of support.”
The biannual Congenital Heart Education Forum is a patient-first initiative which aims to meet needs of a rapidly expanding group of adults with congenital heart disease; the event was generously supported by the University Hospital Foundation.
“We really have an incredible team of staff and physicians committed to caring for adults with congenital heart disease – and their families,” says Heggie. “We are constantly striving to improve the transition from pediatric to adult care and better support patients like Danielle.”
