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Canadian Congenital Heart Alliance

Board Members show their support for CCHA

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Board member Christelle

 

See why our Board Members support CCHA and its mission.

Christelle Roy-Couillard

I was born with a congenital heart defect called ALCAPA. Although I’ve lived with this my whole life, it was only discovered when I was 26 years old. The fact that I lived well into adulthood without a serious outcome was surprising and I feel blessed to have made it through. Since my diagnosis, I’ve been seeing the team at the Toronto General Hospital Peter Munk Cardiac Centre. I had open heart surgery to repair my anomalous coronary artery on November 24, 2014 and due to complications, required a second surgery on December 5, 2014. I spent almost a month in the hospital and had a difficult surgical course. I am forever grateful to my cardiologist, the entire nursing staff, surgical team, and attendants who cared for me during that time. In January 2015 I attended a cardiac rehab program in my hometown which helped me gain strength and rebuild my confidence with physical activity. I cannot imagine where I would be today had it not been for the skilled professionals in charge of my cardiac care and the medical interventions available to me.

An important part of living with Congenital Heart Disease is being an advocate for yourself and your condition. I have met and interacted with many general practitioners and cardiologists over the years who have never heard of my specific CHD. That is why it is so important to find an Adult Congenital Heart Disease (ACHD) specialist. I was thrilled to join the Canadian Congenital Heart Alliance as a Board Member in 2019 and I strongly believe in our mission to advocate for and enrich the lives of people living with CHD through awareness, education, research and support.

CHD is the world’s leading birth defect, yet is severely under-researched and under-funded. That is why I’m so passionate about connecting with others living with CHD and working hard to develop resources and spread awareness.

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Board member Christelle

Je suis née avec une malformation cardiaque congénitale appelée ALCAPA. Bien que j'aie vécu avec cela toute ma vie, cette malformation cardiaque congénitale a seulement été découverte que lorsque j'avais 26 ans. Le fait que j'ai vécu jusqu'à l'âge adulte sans problèmes sérieux était surprenant et je me sens chanceuse d'avoir traversé cela. Depuis mon diagnostic, je vois l’équipe du Centre Cardiaque Peter Munk à l'Hôpital Général de Toronto. J'ai subi une chirurgie à cœur ouvert pour réparer mon artère coronaire anormale le 24 novembre 2014 et en raison de complications, j'ai dû subir une deuxième chirurgie le 5 décembre 2014. J'ai passé près d'un mois à l'hôpital et j'ai eu un cours de chirurgie difficile. Je suis éternellement reconnaissante à mon cardiologue, à tout le personnel infirmier, à l'équipe chirurgicale et aux préposés qui ont pris soin de moi pendant cette période. En janvier 2015, j'ai participé à un programme de réadaptation cardiaque qui m'a aidé à reprendre des forces et à retrouver ma confiance en moi grâce à l'activité physique. Je ne peux pas imaginer où j'en serais aujourd'hui sans les professionnels qualifiés en charge de mes soins cardiaques et des interventions médicales qui m'ont été offerts.

Une partie importante de la vie avec une cardiopathie congénitale est d'être une porte-parole pour sois même et de sa condition. J'ai rencontré de nombreux médecins de famille et cardiologues au fil des ans qui n'ont jamais vu cette condition spécifique auparavant. C'est pourquoi il est si important de trouver un spécialiste de la cardiopathie congénitale chez l'adulte (ACHD). J'ai été ravi de me joindre à l'Alliance Canadienne du Cœur Congénital (CCHA) en tant que membre du conseil d'administration en 2019 et je crois fermement en notre mission d'enrichir la vie des personnes atteintes de cardiopathie congénitale et malformations du cœur présentes à la naissance par la sensibilisation, l'éducation, la recherche et le soutien.

Les malformations cardiaques se produisent plus fréquemment que toute autre anomalie congénitale mais sont moins étudiées et gravement sous-financée. C’est pourquoi je suis passionné de me connecter avec d’autres personnes atteintes de maladies cardiaques. Ensemble, nous développons des ressources avec l’aide de la mobilisation et la sensibilisation.

 

Bengy Mercier

Board member Bengy and her daughter

Mon nom est Bengy Mercier. Je suis membre du conseil d’administration de la Canadian Congenital Heart Alliance (CCHA), une organisation qui aide les personnes vivant avec une malformation cardiaque congénitale à mieux connaître et comprendre leurs conditions et à sensibiliser l’ensemble des Canadiens sur l’existence des maladies cardiaques congénitales. Le but de cet article est de vous parler brièvement de mon histoire et de l’importance jouée par la CCHA dans ma vie.

Le 10 novembre 2017, lors de l’échographie de routine à 22 semaines de grossesse, j’ai su que mon enfant allait naître avec une malformation cardiaque. La joie que j’ai eue en sachant que j’allais avoir une fille s’était soudainement transformée en un tourbillon de peur, de questionnements et de doutes en un seul instant. La semaine suivante, au département de cardiologie de l’Hôpital de Montréal pour enfant, le cardiologue a confirmé que mon enfant avait une tétralogie de Fallot avec absence de valve pulmonaire.

Mes recherches sur la malformation cardiaque de ma fille ont débouché sur le site de la CCHA. Les ressources disponibles m’ont aidée à comprendre ce que sont les malformations cardiaques congénitales et les défis qui s’y rattachent. De plus, l’histoire des autres personnes disponibles sur le site a été d’un grand réconfort.

Le 9 mars 2018, ma fille est née dans un état critique, les contractions ont eu de graves impacts sur son cœur. Les médecins nous ont expliqué qu’ils ont dû faire une réanimation cardiaque et qu’il y avait d’autres inquiétudes par rapport à ses poumons. Après environ trois semaines aux soins intensifs, les médecins ont décidé que ce serait mieux de reporter sa chirurgie cardiaque, car ils ont réussi à tout stabiliser.

Alors que ma fille venait juste d’avoir trois mois, j’ai reçu un appel pour confirmer sa chirurgie. Ce n’était pas facile de la remettre au chirurgien et d’attendre après environ douze heures pour la voir. Heureusement, tout s’était bien passé. Les jours suivants avaient leurs propres obstacles, mais ma fille s’en est bien sortie.

Les malformations cardiaques congénitales sont des conditions chroniques avec lesquelles il faut vivre toute sa vie. Il m’a fallu en tant que parent m’éduquer davantage afin de poser les bonnes questions aux médecins. En reconnaissance de tout le support que la CCHA m’a apporté à travers ses ressources, j’ai eu fortement le désir de m’impliquer afin d’aider l’organisation dans la réalisation de ses objectifs.

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Board member Bengy and her daughter

My name is Bengy Mercier. I am a board member of the Canadian Congenital Heart Alliance (CCHA), an organization that helps people living with congenital heart defects (CHD) to better know and understand their conditions, and to make all Canadians aware of the existence of congenital heart disease. The purpose of this article is to briefly tell you about my story and the importance CCHA has played in my life.

On November 10, 2017, during my 22 weeks pregnancy ultrasound, I learned that my child was going to be born with a heart defect. The joy I had knowing I was going to have a daughter suddenly turned into a whirlwind of fear, questioning and doubts in a single instant. The following week, in the cardiology department of the Montreal Children's Hospital, the cardiologist confirmed that my child had Tetralogy of Fallot with absent pulmonary valve.

My research on my daughter's heart defect led me to the CCHA website. The resources available helped me understand what congenital heart defects are and the challenges associated with them. Also, the stories of others available on the website have been a great comfort.

On March 9, 2018, my daughter was born in critical condition, the contractions having severely impacted her heart. The doctors explained to us that they had to undergo cardiac resuscitation and that there were other concerns with her lungs. After about three weeks in intensive care, the doctors decided it would be better to postpone her heart surgery until she was stabilized.

When my daughter was just three months old, I got a call to confirm her surgery. It was not easy to hand her over to the surgeon and wait for twelve hours to see her. Fortunately, everything had gone well. The following days had their own obstacles, but my daughter did well.

Congenital heart defects are chronic conditions that you have to live with all your life. It took me as a parent to educate myself more in order to ask the right questions to the doctors. In recognition of all the support that CCHA has given me through its resources, I had a strong desire to get involved in helping the organization achieve its goals.

 

Jacey Hughes

Board member Jacey

My name is Jacey, I’m 27 years old and I was born with congenital heart disease (CHD), aortic stenosis, and had open heart surgery when I was seven years old. I was never scared or nervous of my heart disease as my parents and family brought me up with positivity and support in regards to my heart. When I was eight I started to play hockey, which led me to play up into competitive leagues as I loved the sport. I also played baseball and soccer throughout my high school years. I believe being as active as I was at a young age into my adult life saved my life, keeping my heart strong and has allowed me to live my life in a very positive way. 

I continue to be active and have the support and love of my family and partner in my CHD journey. I go yearly to my team of cardiologists for check ups. I wanted to join the CCHA as I am passionate about helping people and know my journey well coming from the IWK to the QEII in Halifax, Nova Scotia. My transition on the east coast was smooth and I understood the importance of each appointment and attendance. This was always made clear while growing up and I truly appreciate my parents for the amount of care and positivity they gave and continue to give to me. That is something I bring with me everywhere I go, to be an advocate for my own health.

Will you join us in supporting our mission to advocate for and enrich the lives of people living with CHD through awareness, education, research and support. Learn more https://www.cchaforlife.org/news/giving-tuesday-2020

 

 

Anna Bailie

Board member Anna

I was diagnosed with a congenital heart defect - a coarctation of the aorta - when I was 13. All of a sudden, a childhood during which I had found it hard to keep up with the other kids made a lot more sense.

 

Thanks to excellent surgeons, my defect was repaired. I have been followed since then by congenital heart clinics, first as a child and now an adult, to ensure my heart is functioning as best as possible. Ongoing, expert care from cardiologists has ensured I enjoy a full and healthy life.

 

Organizations like the Canadian Congenital Heart Alliance are critical because of the advocacy they perform on behalf of the many Canadians who live with congenital heart disease (CHD); from their collaboration with researchers and cardiologists to their sharing of important information. For me, the information about pregnancy and CHD shared by the CCHA was extremely helpful when my husband and I were considering starting our family, and more recently, when I considered what COVID-19 means for me.

 

I am proud to be a Board Member of the CCHA and hope to help this organization do more for the 1 in 100 Canadians born with CHD.

 

 

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Are you an adult with congenital heart diseases? To find a cardiologist with specialized training in adult congenital heart disease, please read for important info.

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