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From the Heart

Written by Jen Janzen

What do you do when you bring your child to the doctor with symptoms like fatigue and loss of appetite and, after a series of tests, you find out that your child’s heart is failing and will never get better?

Answer: You get your child on a heart transplant list and do everything you can to support the existing organ until a donor heart is available. Maybe your child will be outfitted with a ventricular assist device, or VAD, which takes over part of the heart’s function.

Whatever happens, you’ll most likely be scared and overwhelmed. You’ll have questions – lots of them – and you’ll need a calm, caring person to teach you how to use the equipment that could save your child’s life.

That’s where Osiris Zelaya comes in. As the VAD program co-ordinator at the Stollery Children’s Hospital, she’s the go-between for the patient, clinical staff and physicians. Osiris helps provide ongoing health assessments, patient education, treatment plan evaluations and follow-up care.

“Hearts don’t become available at the snap of a finger,” she says, “and unfortunately, these patients don’t have time to wait. Medically, they will die if their heart is not supported.”

But if the VAD isn’t a real heart, it’s a pretty good stand-in for one. “It’s basically a mechanical heart,” Osiris explains.

Here’s how the VAD works: The pump is implanted in the heart, and attached to the pump is an electrical cable known as a driveline that comes out of a small hole in the abdomen. The driveline, connects to an external controller which runs the pump and has audible alarms to help manage the operation of the system. The controller and pump are powered by two batteries, which at night the patients connect to the wall for power. This type of VAD is meant for long-term use, Osiris explains.

The device used to be so bulky that only adults with larger chests could be fitted with one, but modern long-term VADs are much smaller and can be warn by children – and there are even some devices small enough for infants.

Even though the manufacturers have not yet designed a convenient carry device for pediatric patients, Osiris’s team has discovered that a regular backpack is a good solution for the control units, which weigh in at a relatively light three-and-a-half pounds. After receiving her registered nurse (RN) designation seven years ago, Osiris spent a few years as a pediatric intensive care nurse before becoming a specialist in a cardiac and respiratory technique called ECMO (extra corporeal membrane oxygenation). She’s been the VAD co-ordinator for two years.

“I think it’s an exciting field,” she says, noting that the Stollery’s pediatric VAD program is considered one of the five best in the world. In 2011, the Stollery was the first hospital in Canada to implant a pediatric VAD. “The patient was discharged from the Hospital and that was unheard of at the time. This is definitely a world-class program.”

Although the continuous innovations are thrilling, most of the satisfaction Osiris derives from her job is in her work with the patients and their families. “When parents see their little one with a device, it’s very overwhelming,” she says. But after they learn how to care for the unit – how to shower with them, keep the units powered, and detect an emergency – the family comes up with a plan, and “what seems to be scary is more manageable,” she says.

“They see their litte one becoming more like before they were sick: they can go to school, have friends, share life with their families. If it wasn’t for devices like this, more deaths would occur. Above all, we’re giving them quality of life.”

Published, Spring 2016, Stollery Children’s Foundation