Canadian Congenital Heart Alliance

#CHDAwareness

CCHA: A Case to Support the Heart

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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...

Applications for Board of Directors positions now open

 

The Canadian Congenital Heart Alliance (CCHA) is looking for its next generation of leaders to fill critical volunteer positions on our national Board of Directors. This elected group supports the work of CCHA and provides mission-based leadership and strategic governance.  We believe that a highly effective Board includes members from across Canada from many walks of life and that this diversity helps to best guide the overall strategic management and stewardship of the Foundation.  The CCHA’s Nominating Committee needs your help to identify Board candidates. We are looking for committed people...

Illustration of Penelope

 

The Canadian Congenital Heart Alliance is thrilled to announce the launch of a children's book "Penelope goes for her heart checkup".

Follow Penelope - a young girl - as she travels to the hospital for her ‘heart checkup’ with her Heart Team in this beautifully illustrated book for children ages 5-8. 

To learn more and download the book visit https://www.cchaforlife.org/penelope-goes-her-heart-checkup

KIDS ACTIVITY ALERT!!!  To be a part of Penelope's journey, download the colouring page below. Colour Penelope and her Heart Team and take a pic of the completed colouring page, tag us...

Illustration of Penelope

The Canadian Congenital Heart Alliance launched their children's book "Penelope goes for her heart checkup" in February 2021.

This illustrated book for children ages 5-8, follows Penelope - a young girl - as she travels to the hospital for her ‘heart checkup’. Reading this story with your child a few days before their ‘heart checkup’ will assist in preparing them for their visit with the 'Heart Team'.

The book includes 2 colouring activity pages to help your child engage with Penelope on her journey. Download here PDF icon Download Penelope and her Heart Team colouring page.pdf (180.32 KB)

Some...

Advocacy information for parents and adults with CHD

 

For individuals and parents of a child living with a congenital heart condition, self-advocacy skills are necessary to communicate with all their health care providers, manage their day to day activities and make effective use of community resources.

What is Self-Advocacy? Self-advocacy is when a person is able to speak up in order to communicate their needs. In medical settings, self-advocacy strategies are helpful to make sure you and/or your family are understood, that your needs are being met, and that you have understood the information and advice you've been given by your healthcare...

Stay home save lives COVID19

Image_by Grégory ROOSE from Pixabay(4983843_1280)

The World Health Organization officially declared COVID-19 a global pandemic on March 11, 2020 with Canada and provinces putting lockdowns in place shortly thereafter.  For 7 weeks now Canadians having been living through this COVID-19 pandemic.  We are all living with heightened emotions, living life day to day, not knowing what tomorrow or next week is going to look like, unable to make plans for the future.  We are all dealing with emotions such as fear and anxiety due to uncertainty and stress about jobs, school, financial wellbeing, health...

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

 

 

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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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