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The rivalry for little hearts and big minds

Berlin heart recipient, Parker Seely, 15 months and his mother Jessica Seely at the Stollery Children's Hospital in Edmonton.

John Ulan/John Ulan/Epic Photography

Laughing, grabbing his mother's hair and kicking his legs wildly - Chace Campsall is, in many ways, like any other 10-month-old. However, for all his precocious energy, trouble lies under the base of a pair of tubes protruding from his tiny belly. His heart is weak and two times too big.

A decade ago, it might have been a death sentence. But Chace, who suffers from a rare heart defect known as dilated cardiomyopathy, relies on a mechanical heart to live as he awaits a transplant. "If he didn't go on this [mechanical heart] he would be dead," his mother Christa Campsall, 37, says, sitting beside the purring blue machine that looks like a small shopping cart, attached to the tubes. "Without a second thought."

Introduced in Canada six years ago, the EXCOR pediatric ventricular assist device, or "Berlin Heart," has proven to be a game-changer, doctors say. The EXCOR device (it stands for extracorporeal, outside the body) allows children on the transplant list to play, eat and sleep normally for months on end as they wait for an organ from a small and shrinking pool of donors.

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In a country as spread out and thinly populated as Canada, the rare procedure is only done regularly at two hospitals - Edmonton's Stollery Children's Hospital, where Chace, who hails from Victoria, has spent the past four months, and Toronto's Hospital for Sick Children.

Now a third hospital appears to want in.

The B.C. Children's Hospital has an extensive pediatric open-heart surgery program, performing about 170 operations a year. But, interested in performing pediatric heart transplants and installing Berlin Hearts, the Vancouver hospital has recruited Sanjiv Gandhi, one of the United States' top Berlin Heart experts, from the St. Louis Children's Hospital. He will start in July. (A hospital spokeswoman would only say there is "no immediate plan" for such an expansion.)

On the face of it, a third centre is a positive step. It would bring the procedure to another part of the country, so that heart-transplant patients and their families would not have to travel at great expense to one of the two pediatric hospitals that act as de facto regional hubs. (It would also provide an alternative to Toronto, a city that Western Canadians do not precisely warm to. "I can't imagine going to Toronto. That'd be crazy," says Alberta mother Jessica Seely, whose son is recovering from a heart transplant at the Stollery.)

However, there is only a small pool of talent in Canada who perform the Berlin procedures. If the B.C. hospital recruits from within Canada, that raises a question for parents whose children may require a transplant: Can that pool of international talent be divvied without diminishing the level of care?

"We have right now, in Toronto and Edmonton, two programs with extremely good results," says Holger Buchholz of Edmonton's Stollery, carefully. "It's the high-end stage of pediatric cardiology medicine. You need an extremely good team, a team of pros."

Toronto developed its program first, sending staff to Germany in 2004 for training. Scrappy, small-scale Stollery, part of the University of Alberta hospital, expanded aggressively into the technology soon after, poaching Sick Kids staff and hiring Dr. Buchholz, a cardiac surgeon, who had worked with the technology's rollout in its namesake city. In 2006, the Stollery became North America's first Berlin Heart training centre.

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Stollery and Sick Kids have since divided (somewhat acrimoniously) the relatively small pool of high-level talent required for the advanced medical treatment, giving Canada two world-class centres for the technology.

"I hope, with a third program in Vancouver, we can keep results as good as they are," Dr. Buchholz says.

Anne Dipchand, the head of Sick Kids' heart transplant program, is confident the three can co-exist peacefully. "The bottom line is that it would be best for the patients and, if done with the appropriate resources and infrastructure, I have no doubt that Vancouver could have a solid heart failure and heart transplant program," she says.

The Berlin Effect

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.

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"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.

The technology is not without its complications. While Chace waits, 15-month-old Parker Seely is recovering across the hall, a scar running down the middle of his chest with stitches closing two incisions on either side, where the Berlin tubes once were.

In the Stollery and on the Berlin since February, the young boy received his heart transplant on May 31, but had two strokes while waiting, as his blood kept clotting in the Berlin Heart's plastic tubes.

"It was either that or we'd be in ICU, and he'd be strapped to a bed. He couldn't do anything," said Ms. Seely, 27.

"It is life-saving. They need it. The kids need it in order to, you know ..." the mother says quietly, pausing, "stay around."

The question will now be whether Vancouver goes ahead with a small-scale program, like the two in Montreal, or if it mounts a recruiting effort. With relatively few Canadian patients, another major centre might mean some doctors going months without performing a procedure.

"After six months [without a new patient] you pretty much start from scratch," Dr. Buchholz says. "It's much easier, of course, if you have ongoing patients to keep the quality [of surgery]"

Ms. Campsall and her husband, Anthony Herman, have had to rent an apartment in Edmonton and will rack up between $15,000 and $20,000 in expenses while their son is at the Stollery.

It would have been more convenient for them to get Chace treatment in Vancouver, near their home, family, and dog, Nakita. Like any parents, they wanted world-class care for their son. "I have mixed feelings on it. Yes, it would be nicer to have the treatment closer to home," Ms. Campsall says.

"It's irritating that we have this great hospital [in B.C.] and I have to travel to Edmonton or Toronto," Mr. Herman says.

But, his wife adds, "What's the point of every province doing so few [procedures]when one or two provinces can have the experts?"

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About the Author
Parliamentary reporter

Josh is a parliamentary reporter in Ottawa. Before moving to the nation's capital in 2013, he covered provincial affairs in Edmonton and throughout Alberta. He joined the Globe in 2008 in Toronto before returning to his home province in 2010. More

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