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Canadian Congenital Heart Alliance

#CHD

CHD Awareness Week in media

 

Jennifer Michaud - CCHA Board member shares her CHD story on the Marilyn Denis show.

https://www.marilyn.ca/Health/Articles/February2020/Filling-the-research-gap.

You can see her Heart and Stroke interview here

https://youtu.be/5CBy3zmjNAM

 

CTV2 London – Hearts of London/Middlesex chapter of CCHA with Chair Lisa Wright and Owen Gillet – Feb 11, 2020

Owen Gillet shares his CHD story of living with HLHS, diagnosed with a life-threatening congenital heart defect weeks before he was born, and he hopes his story of survival will help others.

The purpose of these transition recommendations is to support families understand the stages of Transition and support discussions with your CHD healthcare team.  Transition should be personalized for each individual, in accordance with their chronological age, developmental stage and abilities.  Active engagement in the transition process is vital for teens and young adults and families to prepare for a healthy life as an adult with CHD

Life Stages

Introduction to Health: Age 2-7 years old

Goal - Understanding their body

Transition preparation begins when your child is a toddler; coach them to...

Resources

Health Information Summary

It’s important that your teen carry a Health Summary record in some form at all times. It should include

  • name of cardiac condition and other medical conditions
  • previous cardiac surgeries/interventions and other surgeries
  • name of medications
  • allergies
  • need for endocarditis prophylaxis (Yes/No)
  • names and contact details of health providers (CHD and primary care)
  • other vital info (i.e. low HR, low O2 sat, no pulse in right arm)

What is normal for you and your CHD?

There are many options to achieve this.

Medical Alert bracelet - consider getting a Medic-Alert bracelet as they have 24 hour medical...

Take our survey

We want to hear from you!

We are looking for feedback from teens, young adults and adults and their families about their experiences - past or current in transitioning from pediatric to adult CHD care. 

Below is a link to a brief survey (5 min) to tell us about your experiences.  We wil use your feedback to create educational materials and resources.  We look forward to hearing from you!

Create your own user feedback survey

https://www.surveymonkey.com/r/5QQHRHY

 

 

75th Anniversary of 'blue baby' surgery

Today we celebrate 75 years since the first "blue baby" surgery by Alfred Blalock, with Helen Taussig and Vivien Thomas on November 29, 1944.

Picture of Dr. Alfred Blalock, Helen Taussig and Vivien Thomas

The child was 15-month-old, Eileen Saxon, the surgery was a success and she went home after 3 months.  Unfortunately her cynotic episodes returned and 2 days before her 2nd birthday, she underwent another operation, she passed away 5 days later.

Now known as the BT or BTT shunt, the surgery was a success and really the start of #CHD surgery.  We have come a long way since then, with an almost 95% survival rate into adulthood now. 

Between 1947 and...

#GivingTuesdayCA is December 3

GivingTuesday Countdown

Thank you for helping us raise $860! 

Be part of something BIG!

So, what IS Giving Tuesday anyway?  Giving Tuesday video

Giving Tuesday is a global movement dedicated to giving back. After the excitement of Black Friday and Cyber Monday, comes Giving Tuesday. Charities, Communities, Businesses and Individuals just like you have the opportunity to give back and make a big impact.

The season of giving is upon us, and what better way to spread some holiday cheer than to raise awareness for CHD (Congenital Heart Disease), the number one birth defect affecting Canadians of all ages.

Check back here...

MP Marilyn Gladu recognizes February 14th as CHD Awareness Day in Statement in House of Commons

 

Thank you to Marilyn Gladu, MP for supporting Congenital Heart Disease (CHD) awareness in Canada and Canadian Congenital Heart Alliance.

By reading your statement in the House of Commons today and recognizing February 14th as Congenital Heart Disease (CHD) Awareness Day in Canada, you help increase awareness and advocacy for the more than 250,000 Canadians living with Congenital Heart Disease, many who require lifelong specialized care.

Marilyn Gladu is the MP for Sarnia-Lambton and serves as the Shadow Minister for Health in the Official Opposition

2019 Faces of CHD campaign

During Heart Month 2019, we highlighted CHD stories of our members from across Canada. Thank to everyone for their stories of strength, perseverance and hope and for sharing their experience with the community of CCHA and anyone who has been touched by Congenital Heart Disease.

 

Meaghan S' story  Meaghan S' Faces of CHD story  PDF iconDownload Meaghan S_Faces of CHD story.pdf (76.53 KB)

 

Rita F's story  Rita's Faces of CHD story  PDF iconDownload Rita F_Faces of CHD story.pdf (72.09 KB)

 

Michelle K's story Faces of CHD Michelle's story   PDF iconDownload Michelle K_Faces of CHD story.pdf (1.02 MB)

Amanda C's story CCHA Faces of CHD in Canada - Amanda  PDF iconDownload Amanda C_Faces of CHD story.pdf (837.88 KB)

Shelley C's...

Aiden and PM Trudeau

image source: Make A Wish Eastern Ontario

Aiden's Prime Minister of Canada for a Day Wish Granted

Aiden Anderson, a 15 year old from London, ON finally had his Make A Wish granted this week.  Aiden has had a passion for politics since he was in Grade 7 when he first made his wish.  Aiden and his family are members of CCHA and part of our Hearts of London/Middlesex chapter in London ON.

This week Aiden's wish came true with an incredible once in a lifetime experience thanks to Make A Wish Eastern Ontario and Make a Wish Southern Ontario. His 4 day journey included

  • An official Prime Minister's...

Those living with Congenital Heart Disease may be concerned developing Endocarditis or if they have been told they no longer require antibiotic prophylaxis.

Below is an excerpt from the Canadian Paediatric Society Position Statement explaining the reasons for the 2007 change to the Guidelines (reaffirmed Feb 28, 2018):

 

Prevention of infective endocarditis: Updated guidelines

Primary reasons for Revision of the AHA guidelines

The new guidelines were not based on the results of a single study but rather on the collective body of evidence published in numerous studies over the past two decades...

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Check out how congenital heart disease stacks up against better recognized diseases in Canada! So many affected and so little awareness and funding! Get involved with CCHA, donate, and spread the word about the growing population of of "survivors" so that we can get the care and support we need to live long, healthy lives!

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