When Kim Robertson had an electrocardiogram (EKG) while pregnant with her youngest son, she had no idea that it would potentially save the lives of some of her family, including her young twin boys.
Screening included a cardiac exam and review with Dr. Andrew Krahn and an interview with a genetic counsellor. The cardiac testing included an EKG, tread mill test and genetic testing, the results identified her diagnosis as Long QT Syndrome (LQTS), a rare heart rhythm condition that that can cause irregular heart rhythms sometime leading to fainting spells, sudden collapse and sometimes death from cardiac arrest.
Her diagnosis led to the rest of her family being tested, discovering that her mother, her twin sister and niece, and Kim’s own twin sons all have the condition.
A good catch
“It was a good catch for my family,” she says. “I’m glad we all got tested. Who knows what would have happened if I didn’t.”
The program that helped Kim and her family was developed by years of research by Canadian heart rhythm specialists who have worked together since 2004 gathering data and blood samples for research to help better understand these conditions and how to treat them to prevent the tragedy of sudden death. The Hearts in Rhythm Organization, or HiRO, founded by Dr. Andrew Krahn three years ago, is a network of Canadian heart rhythm specialists, researchers, allied healthcare professionals and patients working to improve care for patients and families affected by inherited, genetic heart rhythm conditions.
“We believe the best way to take care of these people is with a team,” explains Dr. Krahn. “A team with expertise in kids, adults, hearts, genes, counselling and emotional support, and in research because we have a lot of unanswered questions. HiRO has that.”
The best care possible
“The primary goal is to deliver the best care possible, across Canada,” he continues, “to people with inherited heart rhythm problems.”
Most people with Long QT can be treated simply with a daily heart rhythm control medication, simple life style changes and by avoiding medications that are known to interfere with the heart’s rhythm that include some over the counter cold and flu medications like Gravol.
One in 2,000
Dr. Krahn says about one in 2,000 Canadians have the heart condition.
“And a third of people with Long QT will faint, suffer a cardiac arrest or tragically, suddenly drop dead,” he says. “The main goal of HiRO is to prevent sudden death in Canadians. Kim’s case is a shining example of what we are working for. Kim was diagnosed, her family was screened and treated, so that the tragedy of sudden death can be prevented. Far too often we meet a family after they have lost a loved one to sudden cardiac death.
So thankfully Kim was alerted to her condition by an EKG and her family was screened and treated to prevent tragic incidents like these – being on the medications eliminates almost any chance of it happening.”
“I feel very lucky and fortunate we caught this,” Kim says. “I have young kids and they like to be active and participate in sports. By knowing about this condition, they can be active safely and I don’t have to worry.”
HiRO supports the work of researchers, providers and patients to achieve the goal of delivering excellence in team care to prevent sudden death in these young vulnerable patients and families.