‘Ottawa’ CHEO Project Aims to Make Children Born with Heart Disease More Active
When her newborn, Adeline, was diagnosed with a combination of heart defects three years ago, Sandra Mahoney was told not to let her infant daughter cry.
The exertion, doctors said, could contract muscles in Adeline’s chest and exacerbate her heart condition, which restricted the amount of oxygen carried in her blood. Mahoney, an Ottawa elementary school teacher and mother of three, remembers those first eight months as a particularly difficult time: Adeline’s mouth and feet were often blue from a lack of oxygen.
“It was very stressful, especially with other young children around,” says Mahoney, who would breastfeed Adeline at the first sign of trouble. “We treated her like a newborn for eight months.”
Adeline underwent open-heart surgery when she was eight months old to correct four heart defects, part of a rare condition called Tetralogy of Fallot.
Today, more than two years after Adeline’s marathon surgery, Mahoney is adjusting to a new reality: She has to trust that her active young daughter is robust enough to play and exercise like any other preschooler.
“I don’t worry so much now because I’ve learned about her condition,” Mahoney said, “and I’ve talked to the cardiologist a lot to make sure she can do everything.”
Mahoney and her daughter are now part of a two-year clinical study called, “Fearless Physical Activity,” launched by the Children’s Hospital of Eastern Ontario and the Canadian Congenital Heart Alliance.
It’s designed to encourage those with congenital heart disease to get involved in normal physical activity and to allay the fears of their parents. Researchers intend to follow the families to understand whether the program has enduring benefits.
“The goal is to show families that there are very few cardiac patients who are actually limited from activity — very few,” explains Dr. Lillian Lai, a pediatric cardiologist at CHEO and one of the study’s principal investigators. “We want to show families — parents as well as kids — that they can pretty much do what they want.”
Children, she says, tend to limit themselves as long as they’re not engaged in a competitive sport where they’re being pushed by a coach: “We usually say to parents, ‘Let the kid restrict themselves. They may not be an Olympic athlete, but they can push themselves, they can participate in sports.’”
Congenital heart disease (CHD) affects one in every 100 newborns in Ontario, or about 1,440 children a year. Those with the condition are born with a defect in the structure of their hearts: some are minor and don’t require treatment, while others are complex and require surgery to correct.
In the 1960s, only about half of those born with CHD reached adulthood. But researchers and surgeons have made huge advances during the past few decades, and the vast majority of CHD patients — even those with complex problems — now survive into adulthood.
As a result, more attention is being focused on quality of life for the growing population of adult survivors of CHD.
Dr. Patricia Longmuir, a CHEO Research Institute scientist, says the population tends to be more sedentary than their healthy peers, putting them at higher risk for diabetes, obesity, anxiety and depression. “The issue is that parents — and even the patients themselves — often think that they might have a heart attack if they do too much physical activity,” she says.
CHEO’s new “fearless” project will demonstrate different kinds of physical activity that CHD patients can do without any concern about heart damage.
A series of “Fearless Physical Activity” events are being held across the province this year. In Ottawa, the first event will be held Saturday at the Bonnenfant YMCA-YWCA Outdoor Education and Leadership Centre in Dunrobin, and will include a scavenger hunt, tai chi lessons and a kite-building session.