The conference, which was held at Ryerson’s bright and spacious George Vari Engineering and Computing Centre, began with Toronto clinic’s nurse practitioner Jeanine Harrison welcoming the participants, who ranged in age from about 20 to one man in his 70s – mostly patients with congenital heart defects (CHD) and a few family members and caregivers.

Dr. Erwin Oechslin, the Director of the Toronto clinic followed by saying how important it was for patients to take control of their futures by learning all they can about their heart defects so that are active participants in their care. He stressed that adult CHD is a relatively new area of medicine, with many patients in the room at the very forefront. This is due, he explained, to the steady increase in patients who are surviving heart defects into adulthood. Where only about 20% survived in the 1950s, now there is now a 95% survival rate due to outstanding pediatric care. Survival, however, is often fraught with challenges and complications, including multiple surgeries, and/or premature/sudden death. Many adult patients will require medications and/or devices such as pacemakers and defibrillators to help prevent life-threatening heart rhythm problems.

Unfortunately, he said, most adults with CHD have been “lost” to follow-up – they don’t know they need ongoing lifelong expert care. They may get lucky and experience a medical emergency that leads them to one of the 15 specialized adult CHD clinics in Canada where they can get the care they need, or they may not be lucky. Even those who are “lucky” will likely find that adult CHD care is a far cry from the care they received as children. Due to a general lack of awareness in Canada about adult CHD, and as a result a lack of healthcare funding, wait times for surgery and catheterizations are longer for CHD patients than those with coronary heart disease (blocked arteries – bypass, etc). 

Dr. Oechslin thanked John MacEachern and the Canadian Congenital Heart Alliance for working to raise the awareness of CHD. He encouraged the audience to get involved in CCHA because numbers count when trying to lobby the government for more funding. He encouraged all of the participants to become active partners in healthcare, by learning, asking questions, and making responsible, healthy lifestyle choices.

Participant comments posted on the CCHA Forum (www.cchaforlife.org/forum/)

“The cardiac conference really challenged me to connect with other people like me and be an encouragement to them, as well as receive encouragement for myself.”

“Well I just got back from the conference and I enjoyed it so much that I decided to come online and register on the forums in hope to become part of what will be a growing community…I loved the conference and I am really happy that it happens. I wish we could even have it more often as I think that community is very important when it comes to facing ACHD. I heard that sentiment echoed a lot in both the managing anxiety workshop and the patient to patient networking workshop…I think I really learned how much I worry about things but I also learned how much strength is in me and that I can find in others. I feel for people that are facing CHD alone and hopefully with more awareness initiatives that group of people will grow to be smaller and smaller.”

I thought the conference was incredible and I walked away feeling encouraged and convicted. I don't know about you but until last year I kind of ignored that I had my disease because it wasn't affecting my lifestyle and I didn't want people to know about it because it formed my identity growing up. Last year I really started to share my story with more people and have been encouraged by the responses and the way it touches peoples' lives. Our testimonies are so huge… It was so encouraging to see other people with the same difficulties I am going through - often times in our own worlds we think that we're the only ones with this disease. Seeing so many other people who were surviving and healthy was a big encouragement to me and I hope we can pass on that encouragement to others.”

 To access a selection of this year's presentations, please click HERE.