children on the list

http://boundarysentinel.com/news/revolutionary-heart-pump-transplant-successfully-performed-rossland-teen-14333 A 14-year-old Rossland girl, Kolby Zanier, and her family are returning home to Rossland this month after the teenager became the first pediatric patient in Canada to receive a leading-edge heart pump that she had implanted at the Stollery Children’s Hospital.

This past August, Kolby received a HeartWare pump, a device that helps her badly damaged heart pump blood through her body. Unlike a typical heart pump, which requires patients to remain in hospital because its external mechanisms are large and immobile, the HeartWare’s external mechanisms, including the controller and battery, weigh less than four pounds and can be contained in a carrying case worn on a patient’s belt or over a shoulder.

This will allow Kolby to enter Grade 10 at her own school, surrounded by friends and familiar classmates.

“For patients on HeartWare, the greatest benefit is that they can be discharged from the hospital and return to everyday life,” says Dr. Holger Buchholz, director of the Pediatric Artificial Heart Program at the Stollery.

The HeartWare pump is implanted near the heart. It uses two small motors to remove blood from the left side of the heart and pump it into the aorta, the large blood vessel that carries blood from the heart to the rest of the body. A cable exits the patient’s skin and is connected to a battery-powered controller.

HeartWare is approved for use in Europe and is currently in the regulatory stages of approval for use in Canada. Alberta Health Services (AHS) doctors obtained special access from Health Canada to use the product. They determined Kolby would be best suited for a HeartWare device because its smaller pump would still provide her body with ample blood flow, and its portability would allow her and her family to return home.

“I’m looking forward to going back to school and can’t wait to see my friends again,” says Kolby.

Increasing the number of health technologies assessed is among the goals of the 5-Year Health Action Plan, jointly developed by the Government of Alberta and AHS, and supported by the province’s stable, 5-year funding.

Kolby was four years old when she was diagnosed with Alstrom Syndrome, a rare genetic disease that can affect vision, hearing, kidney and liver function, and can also cause heart failure.

She and her parents travelled to the Stollery this past July for a heart transplant assessment and, during that visit, Kolby was diagnosed with severe heart and kidney failure.

For more than six weeks, she remained in the Stollery’s intensive care unit while her kidney function restored itself. Doctors determined her heart was badly damaged and, on Aug. 28,
Dr. Ivan Rebeyka implanted Kolby with HeartWare during a five-hour procedure.

Going forward, Kolby and her family will decide whether she will remain on the device long-term or be placed on a wait list for a heart transplant. A patient can choose to remain on a heart pump indefinitely or until a donor heart becomes available.

Kolby’s father Barry is grateful for the care his daughter received at the Stollery.

“The doctors are the top docs in their field, the nurses are amazing and attentive to detail, and the teachers at the Stollery School were also very accommodating,” he says.

The family also appreciates the tremendous outpouring of support and generosity from home. Residents of Rossland and nearby Trail, B.C., have organized several fundraisers for the family to offset the costs of taking time off work and spending time away from home while their daughter has been in the hospital.

“The communities of Rossland and Trail have been behind us in an incredible way,” says Barry. “I can’t even begin to describe the feeling—so many people have chipped in.”

As an outpatient, Kolby and her parents have worked with doctors to familiarize themselves with the HeartWare device. They will return to the Stollery every six months for monitoring.

The Stollery Children’s Hospital is a member of the Western Canadian Children’s Heart Network, an organization that shares clinical knowledge and expertise to improve care for children with heart disease. The Stollery is also a Western Canadian referral centre for complex pediatric heart surgeries and transplants.