Canadian Congenital Heart Alliance

Personal Stories

Read our stories of strength, perseverance and hope living with CHD

Nathalie Lacoste-Hofmann's story (CHD and heart transplant story) (CCHA board member) (article written by Robin Roberts for CHD Awareness Week)

Lisa Wright and her daughter Rachael's story (Pulmonary Stenosis) (Lisa leads our Hearts of London/Middlesex chapter) (article written by Robin Roberts for CHD Awareness Week)

Jennifer Mulder's story (Tetralogy of Fallot (ToF) with pulmonary artery atresia (ToF-PA)) (Jen is the former lead of CCHA's Eastern Ontari chapter and member of Beat Retreat organizing committee) (article written by Robin Roberts for CHD Awareness Week)

Our Faces of CHD campaign from 2019 Heart Month

Jackson's story (Permanent Junctional Reciprocating Tachycardia (PJRT)PDF icon Download Jackson, ON.pdf (320.27 KB)

Véronique's story (coarctation of the aortaPDF icon Download Veronique, ON.pdf (236.71 KB)

Priyanka and Bren's story (children of a parent with coarctation of the aorta and aortic stenosisPDF icon Download Priyanka and Bren, ON.pdf (256.72 KB)

Meaghan's story (Tetralogy of FallotPDF icon Download Meghan, AB.pdf (216.7 KB)

Alex's story  (Mitral Valve Regurgitation and Chronic Atrial Tachyarrythmias leading to being fully pacemaker dependentPDF icon Download Alex, ON.pdf (364.75 KB)

Davita's story (Left single ventricle, single atrium, common AV valve, subpulmonary stenosis, bilateral cava, PDA post Fontan (and situs inversus)PDF icon Download Davita, AB.pdf (490.75 KB)

Maddox's story (coarctation of the aorta and ventricular septal defect (VSD)) PDF icon Download Maddox, BC.pdf (155.55 KB)

Andraya's story  (tricuspid atresia) PDF icon Download Andraya, AB.pdf (385.3 KB)

Jamie's story (atrioventricular septal defect) PDF icon Download Jamie, ON.pdf (170.29 KB)

Sarah Trainor, via CBC (parent of CHD child)

John MacEachern (Discovering cardiac rehab at age 74)

Joe Bladek (Tetralogy of Fallot)

Anne-Marie Koeslag (Tricuspid atresia)

Emily Clarke (Transposition of the great arteries and tetralogy of Fallot)

Toby Marchegiano (complex congenital heart disease)

Shelagh Ross (Tetralogy of Fallot)

Mathew Moreira (Tricuspid artresia)

Carol Allan (Tetralogy of Fallot)

Angela Akerman (Complex congenital heart disease)

Andrea Sager (Tetralogy of Fallot)

Chatelaine magazine story - Achy Breaky Heart (published April 2013)

Dillon Hendrickson video

Read our Board members personal stories and why they support CCHA

CCHA shares stories of CHD journeys with the CHD community. However, some of our loved ones are lost too soon, we also want to share an honour their stories. If you would like to include your loved one in our CHD Tribute/Memorial you can share their info here CHD Tribute/Memorial

We'd love to share your story! If you have a story that you'd like to share, please complete our form here and we will be in touch.

Congenital Heart Surgeons' Society Data Center
The Congenital Heart Surgeons' Society Data Center takes pride in their research and it would not be possible without the annual participation of the patients and families enrolled in their studies. Please click on the banner to be part of their team and to join their community.


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