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Canadian Congenital Heart Alliance

#ACHD

Join the movement - CHD Awareness
 
Be part of a growing movement to increase #CHD Awareness. Join CCHA in the fight!
 
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Congenital Heart Disease journal ceases publication

 

IMPORTANT INFORMATION FROM DR.DOUG MOODIE (EDITOR-IN-CHIEF) ABOUT THE DISCONTINUATION OF THE JOURNAL “CONGENITAL HEART DISEASE”

Congenital Heart Disease journal ceases publication

Send your feedback and let Wiley Blackwell publications know that this Journal is vital to the CHD professional community. 

On Social Media: @WileyNews

CHIP is funded by the community. Your donations and sponsorships help your community stay informed and connected.
 

 

Transitioning from pediatric to adult CHD care

We are excited to announce the launch of our revised and expanded Transition information section on our website, which includes an outline of transition timeline recommendations and a tools and resources section to support and educate youth and families during the transition process. Check it out!

General information about Transition and Risks: https://www.cchaforlife.org/transition 

Transition timeline recommendations: https://www.cchaforlife.org/transition-timeline-recommendations

Tools and Resources: https://www.cchaforlife.org/transition-tools-resources

 
In other news, CCHA collaborated...
CCHA: A Case to Support the Heart

Help CCHA deliver hope this season

Donate Now Through CanadaHelps.org!PayPal donation

The Canadian Congenital Heart Alliance (CCHA) is the only national organization that supports and advocates for the over 257,000 children and adults in Canadian living with Congenital Heart Disease (CHD).

CHD is  the most common birth defect, affecting 1 in 100 babies born worldwide.  CHD is a general term for a range of birth defects that affect the normal way the heart works, and are present at birth. It requires lifelong, specialized care including many auxiliary needs and challenges such as; insurance, mental health, disability, financial planning...

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

 

 

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...

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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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