Babies with heart defects grow up and so does the science that treats them

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Every new mother breathes a sigh of relief when her baby is born healthy. Ten fingers, ten toes. One perfect little heart.

But approximately one in a hundred babies will be born with a heart defect. A congenital heart defect can be so trivial it can remain unnoticed until the child grows up. Or it can be so serious the child will die without surgery.

At one time, most babies born 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 with missing ventricles or abnormal cardiac chambers-or a host of other permutations. If a surgeon did operate, nobody really knew what would happen to that surgically-altered heart over time.

Over the past two decades, doctors have made great strides in diagnosing and treating children with congenital heart defects. 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. This exponential population growth has created a whole new medical specialty-Adult Congenital Heart Defects.

“A congenital heart defect can be very complicated and some cases can be so unique that even the most experienced clinician may never have seen it before,” says Dr. John Dyck director of pediatric cardiology at Capital Health’s Stollery Children’s Hospital in Edmonton. “For that reason, it’s important to collaborate and accumulate a growing body of knowledge in this highly-specialized field.”

Along with the growing body of knowledge comes improved technology, permitting surgery on the tiniest of patients-and improved diagnostics that can even detect heart defects in babies in utero. That was the case with baby Xander Dolski, who received a heart transplant at the Stollery Children’s Hospital in December, 2005-less than four hours after he was born.

Of course, children with heart defects never outgrow them and often need lifelong care. With that in mind, Capital Health’s Mazankowski Alberta Heart Institute, currently under construction, will be one of few heart institutes in the world to accommodate both pediatric and adult patients under one roof. That’s especially important for congenital heart patients who grow up and have to leave the familiar comfort of the Pediatric Congenital Heart Clinic.

“It was like a second home for me. I’d been going there my whole life,” says Alanna Calhoun, who was born without a tricuspid valve in her heart. Alanna had her first surgery at The Hospital for Sick Children in Toronto when she was 11 weeks old, then in Edmonton at the Stollery Children’s Hospital when she was four and seven years old and at the University of Alberta Hospital when she was 22 years old.

By the time Alanna turned 19, she was too old to remain in the pediatric clinic under the care of her pediatric cardiologist, Dr. John Dyck.

“I couldn’t imagine going to a new clinic. I was really scared. It would be like changing parents!”

To ease the transition and ensure continuity of care for patients like Alanna, Capital Health established the Adult Congenital Heart Clinic beside its Pediatric Congenital Heart Clinic. When pediatric patients become adults, they see a new cardiologist but they attend the same place with the same familiar staff. This proximity allows adult and pediatric cardiologists, surgeons, nurses, sonographers and other staff to work together. All the diagnostic testing for both pediatric and adult patients is done by the same specialists who understand the complicated anatomy and function of congenital heart defects.

“These patients require different solutions than patients who acquire heart disease,” notes Dr. Dylan Taylor, head of Capital Health’s Adult Congenital Heart Clinic and founding member of the Canadian Adult Congenital Heart Network. “Our goal is to ensure that kids can continue to receive the care that relates to their special, lifelong condition.”

Treating the lifelong condition of congenital heart disease is a major focus for doctors, surgeons and researchers at the Mazankowski Alberta Heart Institute. In addition to its physical integration with the University of Alberta Hospital and Stollery Children’s Hospital, the heart institute will have one dedicated pediatric operating room and cardiac catheterization lab, plus six adult operating rooms and two catheterization labs. The world-class facility will open in 2007 in Edmonton.

It means that patients like Alanna Calhoun will have the best care-as both she and the science of treating congenital heart defects get on in years.