2006 Archive

One little heart, many caring hands

Behind every child needing heart surgery is a troop of experts that spans four provinces.

Little Cameron McDougald is an adorable baby boy with dark eyes and a great big smile.  At seven months old, he just underwent open-heart surgery to repair a ventricular septal defect--a hole in his heart.  The defect was allowing too much blood to be pumped to his lungs, causing fluid buildup and heart failure.  

Cradled in his mom's arms in his room at Capital Health's Stollery Children's Hospital in Edmonton, Cameron looks a little tired, but otherwise offers no sign of the major ordeal he just endured.  His mom and dad coax smile after sleepy smile from their little trooper. 

"He's doing so well," Cameron's mother, Chandra McDougald says, stroking his face.
 
Cameron's parents have come all the way from La Ronge, Saskatchewan to be by his side at the Stollery Children's Hospital. Chandra sends daily e-mail updates to worried family and friends back in Saskatchewan and Manitoba.   

Strength in numbers
Baby Cameron isn't aware that while his parents and family rally around him, a contingent of medical experts from across the country is rallying around the little boy, too.  This contingent is a group of pediatric cardiology experts called the "Western Canadian Children's Heart Network"—the only cross-disciplinary network of its kind in North America. The Stollery Children's Hospital is the network's primary centre for complex cardiac surgery, including heart transplant.

Comprised of medical experts in centres across the four western provinces, the Network meets regularly via teleconference or in person to discuss pediatric heart patient cases.  It brings together top cardiologists, surgeons, hematologists and other specialists involved in caring for children with heart problems.

Bridging knowledge gaps
In the highly-specialized and often perplexing field of pediatric cardiology, sharing information is crucial, says Dr. John Dyck, Director of Pediatric Cardiac Sciences at Capital Health's Stollery Children's Hospital in Edmonton.  "Some congenital heart defects may be so complicated or unusual that a cardiologist may have seen a particular defect only once or twice before. By sharing data and experience, we can acquire an essential body of skill and knowledge."

Growing need for information
The demand for this information is growing.  It's estimated that approximately one in a hundred babies are born with a heart defect.  At one time, babies with serious congenital heart defects died.  Doctors didn't know enough about these so-called "blue babies" and the complex anatomy of their tiny malformed hearts. If a surgeon did operate, nobody really knew what would happen to that surgically-altered heart over time. But over the past two decades, doctors have made great strides in diagnosing and treating congenital heart disease.  Today, about 95 per cent of these young patients survive to adulthood.  That means a growing generation of children with congenital heart defects will become adults in the next few years. 

"It is a highly-specialized field. Congenital heart disease has every array of what can go wrong in the developing heart," says Dr. Derek Human, chair of the Western Canadian Children's Heart Network and Division Head of Pediatric Cardiology at BC Children's Hospital.  "We're dealing with a group of patients whose optimal care is not defined. It's a work in progress."

Removing geographical boundaries
Only two surgical centres within the huge Western Canadian geographical region are equipped to handle pediatric heart surgery:  B.C. Children's Hospital in Vancouver and Stollery Children's Hospital in Edmonton.

In 2005, 16 children received successful heart transplants at the Stollery Children's Hospital, making it one of the busiest pediatric transplant centers in Canada.

Children who undergo many different types of cardiac surgery at the Stollery Children's Hospital have some of the best outcomes in the world according to a recent survey of 51 pediatric hospitals in North America.

In 2007, cardiac services for children will be further enhanced by the opening of the Mazankowski Alberta Heart Institute. It will be one of the few heart institutes in the world to house both pediatric and adult heart patients.  The Network helps arrange transfer of patients to these surgical centres.

A win-win for families and cardiology teams
"Knowing we're part of a regional program puts everybody at ease," says Dr. Reeni Soni, head of pediatric cardiology in Winnipeg.  "The network creates clear paths of communication between surgical sites and non-surgical centers such as ours. We can provide the surgical team with a more complete description of our patients' conditions before they actually arrive for surgery. It means smoother transfers for our families and hopefully takes some of the stress out of their surgical journeys. It also allows for more complete planning and counseling of families before they depart from their home cities. These lines of communication are equally important when our patients are ready to return home after their surgery, allowing our team to pick up where the surgical centers have signed off. It is clearly a win-win situation for patients, families and the cardiology teams."

The Network also makes it possible for small centres—without the population base to support a major cardiac centre—to tap into the knowledge and expertise at larger centres, and to share valuable data or collaborate on research.  "We can ask a question—say, 'what has happened to patients with transposition of great arteries?' and access all consultation, surgical and investigation reports.  It's extremely valuable," Dr. Human says.

The Network also removes all geographical or competitive barriers among hospitals, notes Dr. Patti Massicotte, a renowned hematologist at Capital Health's Stollery Children's Hospital who shares her expertise in preventing blood clots in patients with heart transplants or mechanical devices.  "We can't operate in isolation.  It's better to share resources and knowledge.  Strength in numbers only helps to provide better outcomes for the kids.  Because that's what this is about—the kids."

At the end of the day, it means kids like Cameron McDougald will be in good hands at the Stollery Children's Hospital. Many good hands.

• Western Canadian Children's Heart Network