Before the Berlin Heart was developed in Germany, a child waiting for a transplant would instead be sedated, and placed on extracorporeal membrane oxygenation, or ECMO, which required them to be intubated and immobile in intensive care. It had a low survival rate and ran the risk of complications, such as kidney failure and infection, before a transplant was available - a wait that can often run several months.
The fatality rate on ECMO is 38 per cent, compared to 13 per cent for the Berlin, Sick Kids' Dr. Dipchand says, plus the Berlin affords a higher quality of life.
"You can support the patients longer. They can have rehabilitation because they don't have to stay in the ICU," she says, adding the patient's body tends to recover from any damage caused by a weakened natural heart, and is better prepared for the trauma of a heart transplant. This often leads to a speedy recovery.
The Berlin Heart works by essentially intercepting blood flow at a ventricle before filtering it and pumping it back into the body. There are several sizes of the device, designed especially for children, ranging from a few days old to adolescents. But it's exceptionally expensive - tens of thousands of dollars for the hardware, plus training for doctors and nurses and complex support programs, including physiotherapy and nutrition programs.
First used in 1992 and brought to North America 12 years later, the Berlin Heart is now standard fare on the continent, despite the provinces' reluctance to cover the cost, which is about $36,000 per heart. Many insurance companies in the United States balk at the cost; and some patients use several before a new live organ is found, raising the expense.
Sick Kids and Stollery cover the cost in different ways - Sick Kids from its general operating budget, while the Alberta government pays for the service at the Stollery. (It's too early to say how funding will operate in British Columbia.)
The incentive, other than saving children's lives, lies in the attention and credibility such programs bring. The recognition is attractive for a hospital such as the Stollery, which is fighting its way onto the world stage. Such programs also drive critical fundraising.
"Programs like this cost a lot of money, but they also bring in a lot of money, bring in a lot of recognition," Dr. Buchholz says, confiding that when he was approached about the job in 2006, "My first response was: Where is Edmonton?"
Since then, "We've moved from a small centre to an international centre with world-class experience," he says.
"In Toronto and Edmonton, it'd be hard to explain why children are dying waiting for transplant, whereas in London, Berlin or Boston, they'd just go on the Berlin Heart," Dr. Buchholz adds.
"They've made such an impact on our patients' ability to wait and their survival," Dr. Dipchand says. "We feel like we can't not use them."
The number of mechanical hearts being given to pediatric patients is growing "exponentially," she adds.
To date, Stollery has installed 24, and Sick Kids 22 (a couple have been installed at two Montreal hospitals). Of the recipients, 40 per cent are infants.
The complex reality
The cases vary. Chace's battle began about six months. He was born healthy, but signs started appearing when he was a few months old. He looked pale, and would sweat during breast feeding. Doctors assumed he had a minor ailment.
"He just had a cold for a couple weeks. We took him to a couple clinics, and they just said 'viral,'" Ms. Campsall says. But soon, Chace started having trouble breathing.
"So, we took him straight to emerg. We haven't been back [home]since."
The family was sent to the Stollery in early February, waiting for a replacement heart that's healthy, the correct size and one able to be brought north to Edmonton within the five-hour window for a successful transplant. More than half of Alberta's organ donations come from the United States.