About Heart Beats

A Calgary grass-roots organization providing families with information, resources, financial assistance and emotional support since 1987.

 

Awareness

Congenital heart defects are conditions that are present at birth and affect the structure of the heart and how blood flows throughout the heart and the body. CHDs can vary from simple (such as a small hole between the heart chambers) to complex (such as missing or poorly developed portions of the heart) and can be prenatally discovered during a routine ultrasound or become evident after birth.  The cause of the disease is unknown.

CHD is the most common of all birth defects occurring in about 1 in 100 of all births.  It is also the leading cause of birth-defect related deaths worldwide.  Babies born with complex CHD require one or more surgical interventions before the age of 4.  This is a disease that often requires a lifetime of care including regular follow-up by a cardiologist.  Medication, tests, repeat procedures and surgeries and in some cases, heart transplantation, are all part of life for those living with complex CHDs. 

 

  Maddy – diagnosed with Anomalous left coronary artery from the pulmonary artery at age 11

Maddy – diagnosed with Anomalous left coronary artery from the pulmonary artery at age 11

Information

Our newsletter, Keeping the Beat, is published 3 times per year and is available by subscription, on our website, at the Cardiology Clinic (Alberta Children's Hospital) and at the Adult Congenital Heart Clinic (Peter Lougheed Hospital).  Articles include information about new research and discoveries, personal stories, upcoming events, interviews with cardiologists and cardiac surgeons and many other topics of relevance to our readers.

Heart Beats is also on Twitter and Facebook which helps to keep everyone in the community in the loop.

 

Emotional Support

Heart Beats provides emotional support for children with CHDs and their families through one-on-one support, hospital visits, parent groups, Offbeats for CHD youth in Junior and Senior High, and a variety of family events throughout the year.  For more details, view our "Support" page.

 

Financial Assistance

 Roman - Double Outlet Right Ventricle

Roman - Double Outlet Right Ventricle

It is estimated that every year between 120-140 babies and children in Southern Alberta must travel to the Strollery Hospital in Edmonton for their cardiac surgery.  The length of hospitalization can range between 24 hours for a heart catheterization to up to a year and beyond when waiting for a heart transplant.  According to the Cardiology Clinic (ACH), the average surgical stay in Edmonton is 10 days. The cost of accommodation, gas and food can add up very quickly and can have a major impact on families when funding is unavailable.  

Through our Helping Hands fund, Heart Beats reaches out to these families by providing them with gas and grocery cards to help offset their travel costs.  Heart Beats also offers discreet financial assistance to families who are having difficulty meeting the expenses related to their child's heart disease when other resources are unavailable.  

 

Partnership

Heart Beats is partnered with the Western Canadian Children's Heart Network (WCCHN), a network of pediatric cardiac care providers from the four western provinces - British Columbia, Alberta, Saskatchewan, and Manitoba. The Network's goals are to share clinical knowledge and expertise to improve care for children with heart disease, and to provide support for these children and their families. We also advocate for high quality pediatric cardiac care throughout the four western provinces.

The WCCHN links expertise between five pediatric cardiac care centres: BC Children's Hospital (Vancouver), Stollery Children's Hospital (Edmonton), Alberta Children's Hospital (Calgary), Royal University Hospital (Saskatoon), and Winnipeg Children's Hospital. Pediatric cardiac surgery is performed at two of our network's five centres - Stollery Children's Hospital in Edmonton and BC Children's Hospital in Vancouver. Concentrating surgical expertise enables us to achieve the best results for our patients.