Canadian Congenital Heart Alliance

#CHDAdvocacy

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

Invested Influenza ACHD trial

Study testing high-dose influenza vaccine in high-risk ACHD patients.

A North American INVESTED study will test the hypothesis that high dose trivalent influenza vaccine will reduce cardiopulmonary events to a greater extent than standard dose quadrivalent influenza vaccine in high-risk cardiovascular patients with a recent history of myocardial infarction or heart failure.  An ACHD sub-study will investigate the effects on ACHD population.

Eligibility Criteria

INVESTED eligibility criteria

Already received the influenza vaccine this year, you are not eligible to participate this year.  However, you can still contact the...

Here is a sneak peek at the upcoming collaborative article on medical treatment and care of adults with Congenital Heart Disease in Canada.  Thrilled to be part of this great collaborative research team lead by Dr. Jennifer Lapum at Ryerson University; and included Dr. Suzanne Fredericks also at Ryerson University, Barbara Bailey and Dr. Terrence Yau at Peter Munk Cardiac Centre, Dr. Ariane Marelli at McGill University Health Centre and our own Jennifer Graham at Canadian Congenital Heart Alliance. 

http://bit.ly/2PDQ6Xs

Looking forward to the full article to be published in journal Congenital...

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...

Major milestone in the genetic research for CHD.

 

Toronto (September 20, 2018) – In a remarkable new genetic discovery, researchers at the Peter Munk Cardiac Centre, University Health Network (UHN), Ted Rogers Centre for Heart Research and The Hospital for Sick Children (SickKids) have found strong evidence that rare DNA variations can lead to Tetralogy of Fallot (ToF).

Published in Genetics in Medicine, ...

To read the full article https://www.uhn.ca/corporate/News/PressReleases/Pages/pioneering_genome_...

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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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