HeartWare International, Inc. (HTWR)

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8-1-13 article about 5 year-old HVAD Recipient – “youngest VAD patient in the world” – after 10mos. on HVAD, rec’d a heart transplant…

8-1-13: ”Stollery Patient Youngest In World To Receive Artificial Heart - Surgically Implanted Device (HVAD) Keeps Organ Pumping Until Match For 6 Year-Old Heart Transplant”
http://www.albertahealthservices.ca/8839.asp

EDMONTON — A 6 year-old girl has received a heart transplant 10 months after becoming the youngest patient in the world to have a revolutionary heart pump surgically implanted inside her chest at the Stollery Children’s Hospital.

In Sept. 2012, then 5 year-old Muskaan Grewal received a HeartWare pump, a ventricular assist device (VAD) which took over the pumping function of her heart. The (“HVAD”) VAD, roughly the size of a golf ball, was designed for adults but has been used in a small number of pediatric cases around the globe. “Unlike other artificial heart machines which require patients to stay in hospital, this device did allow Muskaan and her family to return home until a heart became available for transplant,” says Dr. Holger Buchholz, Director, Pediatric Artificial Heart Program, Stollery Children’s Hospital. “We believed this device would improve her quality of life and allow her to start Grade 1 at her own school in her community.”

The pump sits inside the chest and is connected directly to the patient’s heart. The pump is powered by a small controller, outside the body, which is connected to a small cable that passes through the skin of the upper abdomen. HeartWare’s external mechanisms, including the controller and battery, weigh less than 4 pounds, which made it easy for Muskaan to carry them over her shoulders in a backpack. Muskaan was only 10 days old when her parents, Harmon and Sukhjit Grewal, were informed their daughter had Dilated Cardiomyopathy with non compaction. With this rare condition, which occurs in one case per 100,000 live births each year, the heart becomes weakened and enlarged and cannot pump blood effectively, leading to heart failure. Over the years, as her health deteriorated, Muskaan was in and out of hospital and required multiple interventions and medications. In Feb. 2012, she was listed for a heart transplant.

“Before she got the VAD, Muskaan would get tired just from taking a few steps; she was so weak for such a long time. We used to have to carry her from the car to the house,” says Mr. Grewal. “With the device she could run around and play as a normal child.”

The external controller operates the pump and features a 2-line LCD screen to display parameters, alarms, and troubleshooting tips on operating the system. Muskaan’s parents received extensive training on the device prior to her discharge and were given a 24-hour hotline number to call in case of emergency. Selvi Sinnadurai, Edmonton VAD Program Coordinator, travelled to her community where she educated staff at Muskaan’s school. “Thanks to the training, support, and plans in case of emergencies that we received, we felt very confident about going home with this device,” adds Mr. Grewal. “Muskaan has grown up with a number of interventions and she became our little helper, making sure we were doing everything correctly.” After 10 months with the HeartWare pump, Muskaan developed an infection and required hospitalization. During her stay at the Stollery, a heart became available and she received a heart transplant in July 2013.

“We are so grateful for the care we have received, and to the donor parents and family who made the decision to have their child be an organ donor,” says Mr. Grewal. “They have given my daughter the gift of life. If you ask her, she says she is free now.” Muskaan’s cardiac care team expects her quality of life to steadily improve — and that she’ll be back in school to start Grade 2 in September.

The Stollery Children’s Hospital is a member of the Western Canadian Children’s Heart Network, a group of pediatric cardiac programs across Western Canada that work in collaboration to deliver the best possible care for pediatric cardiac patients. The Stollery is Western Canada's largest referral centre for pediatric cardiac surgery and a national leader in pediatric heart transplantation. “I think that Muskaan’s case is truly a success of the Western Canadian Children’s Heart Network to provide world-class care to patients from a vast geographical area,” says Dr. Buchholz. “This collaboration of pediatric cardiac specialists from across Western Canada gave us the opportunity to implant a new device into a young girl who became the smallest patient to ever go home with a VAD.”

The Pediatric Ventricular Assist Device (VAD) Program at the Stollery is one of the largest such pediatric programs in North America, and is at the forefront of mechanical circulatory assist device treatment. In 2005, the Stollery became the first site in Western Canada to implant a Berlin Heart Left Ventricular Assist Device (LVAD); and in 2011, the first in Canada to implant a HeartWare LVAD in a pediatric patient to be discharged home.

In the last year, the Stollery Children’s Hospital Foundation has provided more than $500,000 for specialized diagnostic equipment, research, education and family support — assisting families of children requiring transplantation, VAD and other specialized cardiac care. Thanks to the support of donors to the University Hospital Foundation, adult and pediatric patients at the Mazankowski Alberta Heart Institute are benefiting from the latest technology, research and specialized cardiac programs every day — this includes $400,000 to support the expansion of the VAD Program. Alberta Health Services is the provincial health authority responsible for planning and delivering health supports and services for more than 3.9 million adults and children living in Alberta. Its mission is to provide a patient-focused, quality health system that is accessible and sustainable for all Albertans. *end*