Half of children with heart failure will die or need a heart transplant, an outcome that has prompted new guidelines for emergency room doctors to help recognize the problem.

The Canadian Cardiovascular Society released the guidelines Tuesday during its meeting in Toronto.

About half of children with severe heart failure will die or need a transplant within five years, said Paul Kantor, who chaired the guidelines and is head of pediatric cardiology at Stollery Children's Hospital at the University of Alberta in Edmonton.

Football player Matthew Keene campaigned to get life-saving defibrillators into schools after he was revived with one in 2006. Canadian doctors say it's important to get the devices into other public places as well. (Jim Cole/Associated Press)

In comparison, the death rate from cancer in children is less than 15 per cent, he added.

"We know that by catching heart failure earlier we're dealing with children whose heart is by definition less damaged," Kantor said in an interview. "It hasn't undergone the final changes of swelling up and remodelling that make it so severe and gives us a much better opportunity to help them."

Often children brought to emergency with shortness of breath and cough are thought to have asthma but they actually have severe heart failure, Kantor said.

An unusually fast heart rate and low blood pressure are the clues that are sometimes overlooked.

Unlike structural problems with the heart that are exceptionally well treated by surgeons, heart failure hasn't gained the same attention, Kantor said.

The new guidelines provide a framework to help doctors recognize heart failure sooner and treat it with medications.

Early recognition is key for conditions such as:

• Cardiomyopathy or heart muscle disease, one of the main causes of heart failure in children that should be considered when a child has unexplained rapid heart rate or rapid breathing. It can be caused by gene abnormalities.
• Myocarditis, a viral infection of the heart muscle that may be present when children have abdominal pain and vomiting with signs of poor circulation.

Doctors need to order specialized tests called pediatric echocardiography to exclude heart failure, the group said.

Raising awareness

The son of Rosamund Witchel of Toronto, Philip, was born in London, England, in 2001 and had myocarditis, caused by a virus. Witchel said she recognized that the baby was crying and fussy, and then a midwife saw he was turning blue.

"It was well after midnight of that day that the attending physician there told us that our son had a heart attack and that it was possibly only the second time that he had seen that," Witchel recalled.

After Philip was transferred, he spent 2½ months in ICU and stabilized. But at eight months of age, his heart's left ventricle or pumping chamber was damaged, he wasn't growing properly and Witchel knew his condition was failing again.

The family moved to Toronto and waited for a heart transplant, but Philip died in his mother's arms at 18 months.

"I think the guidelines would have helped," said Witchel, who started a research foundation in her son's name.

Doctors "need to be aware because there's also drugs that they can give to minimize the effects early on," she said.

On Monday, researchers at the conference presented a study suggesting 72 per cent of sudden cardiac deaths among those aged two to 40 occurred at home, even though the cases that grab attention are typically of young athletes who suddenly collapse and die.

Researcher Dr. Andrew Krahn of the University of British Columbia said it's important to have defibrillators in malls and workplaces as well as sporting venues, and that coaches and teachers should be aware of possible warning signs such as fainting.

When the heart beats erratically, which stops the organ from pumping blood, it can lead to sudden death.

"Most people don't report when they faint," Krahn said. "A quarter of people who've had this kind of fatal event have had some kind of fainting event beforehand."

Since the signs are often vague and there is no reliable screening test, those attending the conference are also hoping to increase awareness.

The conference runs through Wednesday.

With files from CBC's Kelly Crowe and Marijka Hurko