The heart of the matter

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This article was published 17/04/2015 (3296 days ago), so information in it may no longer be current.

Their names are fading slowly on a short leather bookmark with a rhinoceros at one end and the year 1994 written at the other end.

Handwritten in ink are the names Caribou, Ulimaumi, Goyal, Terziski, Still, Piller, Baumann, Capili, Bichel, Feakes, Maguire and Petkau.

But fading just as slow is the column next to the names of these babies and young children — the date of their deaths.

These 12 are the Manitoba children who died in the wake of what was supposed to be nothing more than a speed bump on their way to a long life: open heart surgery.

These 12 are the children — the youngest two days old and the oldest four years — who had the unfortunate luck to be born and needing surgery in 1994, shortly after the Health Sciences Centre had restarted its pediatric cardiac surgery program with a new surgeon, Dr. Jonah Odim, and an acting chief cardiologist, Dr. Niels Giddins, after being closed the year before when its only surgeon left, as well as three cardiologists.

The bookmark was created by Manitoba Court of Queen’s Bench Justice Murray Sinclair, who now helms the Truth and Reconciliation Commission of Canada. Earlier, when he was an associate chief provincial court judge in 1994, he oversaw the Manitoba Pediatric Cardiac Surgery Inquest.

The inquest began in December 1995 and ended in the fall of 1998, and in between heard from more than 80 witnesses during 285 days of testimony.

Sinclair said it was then that he made the bookmark. And it’s a bookmark the judge said he has carried with him into every courtroom and hearing he has been in since.

“I have a lot of very significant memories coming out of that experience,” he recalled recently.

“Much of it was listening to the people who took care of the children, the parents, and the grandparents, and the impact the deaths had on the people working with them.

“And I hesitate to say conspiracy of silence, but a lot of things were happening in the operating room which was not shared with parents until the inquest began.”

Sinclair said the inquest was such a strain on him — and took such an emotional toll — that he told people he never wanted to do another one like it again.

“It’s why I initially turned down being part of the Truth and Reconciliation Commission,” he said.

“I was asked initially and I said no because of the tremendous emotional strain I knew there would be. When I was asked to reconsider a year later I agreed.

“But hardly a week goes by that I don’t think about those kids.”

Perhaps surprisingly, Sinclair believes it is “inevitable there will be a surgical program here in Winnipeg” once again someday.

In fact, while all children who need cardiac surgery have been sent out of the province for almost two decades, Sinclair said that’s not what he recommended.

“The recommendation was to close the program here and to start sending cases to Edmonton, but that was always intended to be temporary,” he said.

While he recommended the province talk to other provinces in western Canada to set up a regional pediatric cardiac surgery program, he still thought a local program, which would only do lower and medium-risk surgeries and bring in an experienced surgeon when a more complex one needed to be performed, could be done.

“It was always supposed to be to have all procedures done in Manitoba so the parents didn’t have to move elsewhere,” he said.

“I would be concerned if there was no conversation about bringing a pediatric cardiac surgical program here at some time. You can’t assume the system is the same today as then.” 

Emotions remain raw for Sarah Tena-Schreyer as she looks through a family photo album. Sarah’s daughter Marietess Tena Capili died 21 years ago, just shy of her third birthday. Photo: Ruth Bonneville / Winnipeg Free Press
 

For most people, a dime is just a piece of change, not worthy of a second thought.

For one Winnipeg family, finding a dime in odd places is deeply meaningful. It can bring up happy memories of a young girl who always wanted to play outside and was so full of life.

It can also spark sad memories of a life cut short before she had a chance to blow out the candles on her third birthday cake.

A girl who today should be a young woman, aged almost 24, well on her way to make her mark in life.

But a life can turn on a dime or by a scalpel. That’s what happened to Marietess Ann Capili, who died on Sept. 14, 1994, shortly after receiving what was supposed to be the cardiac surgery that would extend her life, not end it, at the Children’s Hospital in Winnipeg.

Unbeknownst to her parents, Marietess wasn’t the first young child to die in the wake of cardiac surgery here. She was the eighth.

Marietess also wasn’t the last. Four more children died before the surgical program was shut down at the end of 1994. No child has had open heart surgery in Manitoba since.

Marietess’ mother, Sarah Tena-Schreyer said she’s not really sure why but her daughter Marietess was always fascinated by dimes. She said her daughter would walk into the family’s store on a highway near Bird’s Hill Provincial Park and always plunk a dime down on the counter to buy candy.

“It’s weird now because we find dimes everywhere and always in unusual places. It always makes me happy when we find them. We’ll find them by the store’s counter when they shouldn’t be there. In my mother’s house where I lived with her. Even in my house where she didn’t live.

“Anytime we see a dime and think how could it be there we think of her. To us, it’s a reminder that she is always around.

“But if I try to think beyond that I then see her in hospital and that’s not a good thing.”

Marietess was born at St. Boniface General Hospital on Dec. 15, 1991. Her heart condition was diagnosed after birth as having several defects including having a complete hole in her heart.

When Marietess was three months old she received a shunt and it was opened further when she was six months of age.

But two years later, when Marietess was deemed old and strong enough to begin fixing her heart defects, the surgeon who inserted the shunts was no longer here. Instead, Dr. Jonah Odim, who was hired early in 1994, was now the lone surgeon in Winnipeg.

And Sarah could tell something had changed since the earlier surgeries.

“I remember, when she was taken for surgery, the look in the nurse’s eye. I thought she wasn’t saying everything.

“They knew what was going on. It just looks like they were muzzled at the time. But he told us it was a walk in the park.”

What Sarah wasn’t told is that after the deaths of the first children, the decision was made that resulted in the surgical team only performing low risk cardiac surgeries between May 17 to Sept. 7.

Less than a week later, Marietess was prepped for surgery. And a few hours later she was dead.

Sinclair later concluded in the inquest report that an operation like what Marietess needed “was beyond the capabilities of the team” and that “Marietess should have been referred out of province.”

Sarah gets teary eyed as she looks at photographs of her daughter in a family album on a recent afternoon.

“She was active. She would bully her cousin. She was normal. She wanted to do everything. She wanted to grow fast. She was defiant. She was strong.

“Sometimes I wonder if she knew what her fate would be because she wanted to drink coffee. She wanted to wear high heels. I think sometimes she just knew she wasn’t going to have a long life so she wanted to do as much as she could.

“And she would scream when she saw a doctor, but not the last time. Maybe she knew her fate.”

Twenty-one years is a long time and there has always been talk that, perhaps someday, children could once again be rolled on a gurney into an operating room in Winnipeg to get cardiac surgery here.

Sarah said she knows what she thinks of the possibility of cardiac surgery happening here again.

“If they want it open again I’d be really skeptical. I’d tell people to do your own research… I don’t want to see the program go through this again.

“What was the cost for 12 babies?”

 

Donald Lepp and son Russell. For their family, going to Edmonton for a heart transplant surgery was the best option. Photo: Phil Hossack / Winnipeg Free Press
 

While the pediatric cardiac surgery program has been closed for years, it doesn’t mean no new children were born with heart problems. There have been hundreds and they have all been sent out of the province to get their surgical repairs.

Donald Lepp’s six-year-old son, Russell, is just one of them. He was born in August 2008, and a few months later he had a heart transplant in Edmonton.

Today, Lepp said, his son takes “more medication to support his kidneys than his heart.”

Lepp said he has nothing but praise for the current system of diagnosing cardiac problems in Winnipeg, in collaboration with cardiologists across Western Canada, and then transporting the children elsewhere for surgery.

“We have the best cardiologists across Western Canada looking after him and they discuss all the kids in Western Canada,” he said.

“It gives us a ton of confidence.”

As for a system where surgeons would come to Winnipeg at times, Lepp said the system could work “if you have the support system. But it would be hard if you have to start from square one. Now (the system is) where best to send the kids. Some go to Montreal, Edmonton gets all of the acute cases because of our integration, and we’re now seeing a lot more kids go to British Columbia.

“Where on earth do you get treatment like that?”

In the inquest report, Sinclair recommended that if families of children needing cardiac surgery had to be sent elsewhere, the province should set up a financial assistance package so that “family members are in no worse a financial position than if the treatment had been provided in Manitoba.”

What the province came up with was a program which assists families when the out or province surgery is taking place and includes:

• round trip airfare for the child and two parents, or one parent and one adult escort. Or if the child has to fly by air ambulance and there is room, one parent can fly with the child while the other flies on a commercial flight.

• costs of ambulance from hospital to the airport in both cities, taxi costs to an from the airport, or mileage costs if the parents decide to drive instead of fly.

• hotel or residence accomodation is covered for two adults.

• a food allowance for two adults and for the child while recovering as an outpatient out of province.

Even with this help, Lepp said it is still tough for families to follow their children out of province for surgeries.

But Lepp said he still believes it is the best way of doing it because it puts the medical needs of the kids first.

“I was off work for six months,” he said. “You still have to maintain your home at home. It ends up creating a lot of issues. It’s certainly not a vacation.

“But it was the best place for Russell and he is with us.”

Lepp said he and his wife went with Russell to Edmonton from Oct. 3, 2008, through to his discharge from hospital there Feb. 17, and to him flying back March 6, after the first of a lifetime of post-surgical checks of his heart.

He said because their daughter, who was only two at the time, was staying with a family member in Winnipeg, they made arrangements to either have one parent fly back home once every two weeks or have their daughter fly to them.

“We were never away from our daughter for more than two weeks at a time. We wanted to make sure of that,” he said.

• • • • •

Sharon Piller and her husband Ken were living in Carman when their firstborn child, Shalynn, was born at the community’s hospital on July 20, 1994. The birth was normal and, because Shalynn appeared healthy, she was sent home with her parents three days after she was born.

A few days later, after Sharon and Ken noticed their daughter was having trouble feeding and breathing, they went to their family doctor who sent them back to Carman Memorial Hospital. When a chest X-ray showed an enlarged heart, she was immediately transferred to Children’s Hospital where several heart problems were diagnosed, including holes in her heart and a narrowing of the aorta.

Shalynn’s operation to repair her aorta was on Aug. 1. She was fine coming out of surgery, but a few hours later her heartbeat became slow until shortly after 11 p.m. she had a cardiac arrest. It took more than an hour of chest compressions to get her heart beating on its own.

A later test showed she had serious brain damage from the lengthy resuscitation so, after the family agreed to stop treatment, she died in her mother’s arms the next day.

A later autopsy wasn’t able to say why Shalynn died, so it’s not known if her death could have been prevented if she’d had her surgery elsewhere.

Having gone through a similar experience to Tena-Schreyer, Piller is clear in her opinion about the future of a pediatric cardiac surgery program in Winnipeg.

“If there’s not enough patients, keep it closed,” she said. “And, if you do open, make sure the surgeon knows what he is doing.

“It was the worst experience of my life. I hope nobody goes through that again.”

Piller said what makes it harder is she and her husband were actually wanting to take their daughter for surgery in Toronto.

“They said we have the best surgeons here,” she said.

“I’ll never forget how big his (Odim’s) hands were. I even said how are you going to operate on a heart that small with those big hands? I wanted to go to Toronto… I sure wish we could have.

“They talked me into it.”

• • • • •

Lawyer Saul Simmonds represented five of the 12 families at the inquest that looked into why children died at the Children’s Hospital after cardiac surgery.

“It was the kind of thing that truly left its mark on everybody that was involved,” Simmonds said. “The pain and anguish every parent experienced. Like every trauma people experience it more than others.”

Simmonds said his own son was still a baby when he was reading thousands of pages of materials to prepare for the inquest.

“It just brought home what could happen to a child,” he said.

“I still hear time to time from some of the family members. It’s one of those cases I’ll never leave because of the innocence of all of the parents. They all lost a child when they walked into the program with a huge amount of trust and they all walked out so severely scarred.”

Simmonds said no one could have predicted how long the inquest would last.

“We were originally told it would be three months, then five months, then nine months. We were in it for pretty much three years.”

Simmonds said that, based on what he learned at the inquest, if pediatric cardiac surgeries ever were done in Winnipeg again, they should only be minor ones.

“Certain procedures could be done, but anything beyond, centres of excellence are a better process. When you go to a province with 10 million people, the likelihood of quality is better.

“There is a small group of people who do pediatric cardiac surgery. ”

Dr. Reeni Soni, head of pediatric cardiology at the Children’s Hospital, said the creation of the Western Canada Health Network has been one of the key legacies. Photo: Joe Bryksa / Winnipeg Free Press
 

Dr. Reeni Soni, head of pediatric cardiology at the Children’s Hospital, said there have been many changes in the last two decades for how children with cardiac problems are handled.

Soni said the Western Canada Heart Network, representing pediatric cardiac services in hospitals in Winnipeg, Saskatoon, Calgary and Vancouver, was created in the aftermath of the closure of Winnipeg’s cardiac surgery program and the inquest. The trend to regional services isn’t just an approach here, but a worldwide trend.

“We send patients to Edmonton and Vancouver so they maintain a high enough volume to keep good results,” she said.

Currently the cardiology unit in Winnipeg follows 5,000 children annually and sends about 180 children — some 35 of them newborns — out of province for surgery every year.

She said the other benefit to having a coordinated approach is once a week cardiologists from across Western Canada conference link together on video screens to discuss individual pediatric cases.

“It’s a lasting legacy for what was a difficult time here.”

In the years immediately after the closure of the surgical program it was hard to retain cardiologists here, but that has changed in recent years.

“We’ve now rebuilt and have an excellent team now,” she said. “We have learned from the mistakes of the past.”

They have also set up a dedicated social worker to help the families who follow their children out of province for their surgeries.

“They make arrangements for them and help with ongoing counselling. There’s also a family support group where they are set up with a family who went through it before them. That’s often helpful.”

Another advance in the last 20 years has been having cardiac problems diagnosed before the baby is even born, Dr. Soni said. “We can get families even before birth and begin getting them ready.”

• • • • •

Arlene Wilgosh, the Winnipeg Regional Health Authority’s president and chief executive officer, said as far as the WRHA is concerned the Western Canada Heart Network “has now become a best practice as far as we’re concerned.

“The actual surgical event, with the child going elsewhere, is actually a small part of it.”

Wilgosh said the model used for pediatric surgery is a model that the WRHA expects to use for other adult and pediatric procedures in future.

“We’re looking at how is the best way to care for patients with high risk, low volume procedures,” she said.

“Winnipeg will be moving more and more with other jurisdictions.”

As for re-starting a pediatric cardiac surgery program here, Wilgosh admits the events of two decades ago still cast a large shadow.

“People still pause. That was significant in the Manitoba health care system. Out of these tragedies we established a program that stands with the best internationally.”

Wilgosh said the WRHA continues to look at new technologies for pediatric cardiac patients as they come out.

“We want to ensure we have the best program possible for the kids and the parents.”

• • • • •

Prof. Arthur Schafer, director of the University of Manitoba’s Centre for Professional and Applied Ethics, said he can understand why people would like to see cardiac operations for children be performed here.

“With surgical and medical procedures, it is obviously better to have them close to home rather than to have families living long distances away,” Schafer said. “It’s always nicer to have it as close to home as possible for the close support of friends and family.

“But even more important, that it be done well. That the medical expertise be as good as it should be.”

Schafer said there are times, though, when these two objectives can be in conflict unless you live in a major city like New York, Toronto, or London.

“Patients want the best treatment and they want it as close to home as possible. But because of the shortage of expertise, there isn’t a great number of surgeons with the skill or not enough of the teams available.”

Schafer said in cases of a narrow, specialized field, it is still a given that the greater the volume of work the surgeon does, the safer the procedures.

“The infant heart is more difficult than the adult heart and there are different problems,” he said.

“But where can it be done most safely, most efficiently, and with the best outcome — that would be the main question by parents.”

Schafer said the main thing that went wrong with the pediatric cardiac surgery program in Manitoba two decades ago was “the people involved didn’t have a strong sense of the limitation of their skills. Part of that should be knowing when to refer elsewhere.”

• • • • •

Jan Davies, a professor of anesthesia at the Cumming School of Medicine at the University of Calgary, testified at the inquest.

Davies believes the inquest left three legacies which help children not only in Winnipeg, but across the country.

The first was the inquest itself, because of how Sinclair expanded it.

“Determining that he would not simply focus on ‘who did what and how’,” Davies said.

“Rather, he chose to look at the entire health care system, including the patients, the personnel, the equipment used for pediatric cardiac surgery, the environment of the Intensive Care Units, the hospital as part of an organization, and the Government of Manitoba.

“The inquest was also the first to formally introduce human factors and systems analysis into an inquest… other inquests, inquiries and investigations have since followed this model.”

Davies said the second legacy was the way the inquest report was written, focusing on patients and their families, and pointing out it was unrealistic to be able to eliminate human error.

“There was also emphasis placed on the concept that problems with safe patient care lie in the system that organizes and governs the care and that those problems in the system influence what happens to patients,” she said.

“Flawed health care systems will produce flawed health care.”

Davies said the third is the continued outcomes from the inquest report’s recommendations.

“The 36 recommendations — together with the findings — helped improve the health care system at the Health Sciences Centre in Winnipeg,” she said.

“Improvements have also been made elsewhere in Canada.”

• • • • •

Not surprisingly, two of the main people involved in this tragedy two decades ago did not return calls. Neither Odim nor Giddins responded to interview requests.

There might be a legal reason: Odim and Giddins are part of the last medical malpractice lawsuit still before the courts from the cardiac surgery program. A court date has not been scheduled yet.

Through his parents, Ian Dmytriw, known in the inquest report as ID, is suing Odim and Giddins for alleged medical negligence and alleged failure to provide adequte information to give informed consent.

Dmytriw had open heart surgery, but 13 days later, when it was discovered his legs weren’t moving, he was diagnosed as being a paraplegic.

A quick search of the Internet shows that Odim has been senior scientific and medical officer at the National Institute of Allergy and Infectious Diseases’ Transplantation Immunology Branch in Bethesda, Maryland. There he oversees a $110 million portfolio of grants, contracts and cooperative agreements, gives leadership over several national networks of solid organ transplantation, and provides scientific and regulatory advice to various groups including the United States Congress.

Giddins is a pediatric cardiologist at the Vermont Children’s Hospital.

• • • • •

Looking again at photographs of a vibrant Marietess, Sarah’s six-year-old son, Jared, suddenly comes in to give her a hug and asks if she’s OK.

“I have raised my sons to be strong because of my own experience at the hospital,” she said.

“I don’t want them to just do what they are told. They’ve been raised at home to have a voice as equals.

“I just wish I had picked (Marietess) up and run.”

kevin.rollason@freepress.mb.ca

Sarah Tena-Schreyer gets a hug from her youngest son, Jared. Photo: Ruth Bonneville / Winnipeg Free Press