Canadian Congenital Heart Alliance

#CHDAdvocacy

Organ donations help save lives.
 
“Every week 5 Canadians die while waiting for a transplant. Yet, a single donor can save up to 8 lives through their organs, and save or heal more than 100 lives through tissue donation.”
 
Click the link below for more details on how you can help change organ registration system and help save lives.
 
To register for organ donation or for more information, visit https://www.canada.ca/en/public-health/services/healthy-living/blood-organ-tissue-donation.html#a2 and select your...

By Sarah Trainor, CBC

"Thrown into the strange, scary world of critically sick children, heart parents become fierce advocates for awareness." Thanks to Sarah Trainor of CBC for sharing her family's story of their son Ellis' journey with CHD. Ellis' story touches on so many issues that CHD patients and their families face, including the importance of maternal screening for heart defects, the challenges of relocating to seek life-saving medical treatment, and the incredible roles that parents play as caregivers and advocates for their children.

A great piece for generating awareness during...

Congratulations to Nova Scotia for being the first province to declare February 7 - 14th Congenital Heart Disease Awareness Week! Way to go!

Big thanks @Brave_HeartSS @yarrowgillis @BrigadonTweets @IWKHealthCentre and everyone involved to raise awareness for CHD and make this happen.

 

 

Thank you to Marilyn Gladu, MP (Sarnia_Lambton, ON Opposition Health Critic) for reading our statement in the House of Commons and recognizing February 14th as Congenital Heart Disease (CHD) Awareness Day in Canada.

 

https://www.facebook.com/MPMarilynGladu/videos/920094518165380/

Health records

Toronto Star reporter Kristin Rushowy shining the spotlight on issue of medical records retention, a growing problem for Canadians living with CHD who had surgery as a child.

https://www.thestar.com/news/queenspark/2017/07/28/medical-records-of-sick-kids-should-be-kept-for-life-group-urges.html

Province the first in Canada to offer screening to all healthy babies  By Jennifer Chevalier, CBC News. Photo Jean Delisle/CBC

 

The announcement that Pulse Oximetry Newborn Screening is coming to Ontario is amazing news for early detection of babies born with Critical Congenital Heart Defects (CCHD).

This program will help catch upwards of 150 babies a year born with Congenital Heart Disease (CHD) but who currently leave the hospital undiagnosed. “Early detection and treatment of CHD is critical in ensuring the best possible long-term quality of life for individuals that will live with this life-long disease" stated Krista Vriend, President of the Canadian Congenital Heart Alliance (CCHA). "Leadership and progress on...

Jimmy Kimmel

Much love to Jimmy Kimmel as he shares the emotional and heartfelt story of his family's CHD journey with their newborn son 'Billy'', born with Tetralogy of Fallot and Pulmonary Atresia.

A story that many people living with CHD, their parents and families and friends can relate to and understand.

https://youtu.be/MmWWoMcGmo0

A huge thank you to Jimmy Kimmel for the very powerful CHD Awareness and Advocacy story!

 

See as Dr. Oz explains about Tetralogy of Fallot to Jimmy Kimmel and some great insight into the incredible teams that perform these CHD surgeries.

https://youtu.be/6yKh2hNYBYo

 

Shaun...

Transitioning from pediatric to adult CHD care

Transition

Children pass many  milestones growing up, the first day of kindergarten, the liberty of becoming a licensed driver and -going-off-to-college or university, just to name a few. Parents give the necessary “talks” about responsibility, risk and behaviour. These transitions are thought of as rites of passage.

Prepping our youth for entry into adult health care should be no different than transitioning into college, university or into the workforce.  At some point, most individuals will assume responsibility for maintaining and managing their own health. There remains work to do to...

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) https://www.healthing.ca/diseases-and-conditions/heart-health/what-it-fe...

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) https://www.healthing.ca/diseases-and-conditions/heart-health/how-i-care...

Jennifer Mulder's story (Tetralogy of Fallot (ToF) with...

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