A new heart brings new life

by Susie Quinn

For the past 14 months, Comox Valley journalist Susan Quinn has followed the story of Robbie Thompson, a Courtenay baby with cardiomyopathy who set a record for waiting the longest for a heart transplant at Toronto’s Hospital for Sick Children.

Sue Thompson stepped off the airplane at Comox Municipal Airport, hugging her 18-month-old son, Robbie, and inhaling the fresh seaside air. She rushed down the plane’s steps into the waiting arms of Robbie’s Godmother, Joanne Mawhinney—and burst into tears of relief.

The Thompson’s ordeal began more than a year ago when Sue, her husband Ron, and Robbie boarded a plane in Vancouver and headed to Toronto hoping for a miracle. Robbie was seven months old when doctors diagnosed him with cardiomyopathy, which caused his heart to swell and lose its ability to pump properly.

Robbie’s heart became so big (bigger than one of his lungs) that it extended past his ribcage on the left side and blocked his esophagus—which had grown in a curve around the expanded muscle—making it difficult for Robbie to eat. He spent many months with a feeding tube surgically inserted into his stomach, so he could get nourishment.

In September 1998, the Comox Valley community rallied around the Thompsons, holding a charity slopitch tournament to raise money to support the family, organizing a block party and sending get well wishes through a fax campaign organized by the Comox Valley Record newspaper.

The journey was a long and sometimes disheartening one for the Thompsons. On the way to Vancouver, Robbie went into heart failure, while waiting for the ferry. In February, Robbie again went into heart failure when a portion of his left lung collapsed from the pressure of his enlarged heart.

In June, the Thompsons and about 20 other families were evicted with short notice from Ronald McDonald House when the facility closed for four months for renovations. The David Foster Foundation stepped in and assured the Thompsons that rent would be paid for an apartment near the hospital.

In July 1999, cardiologist Dr. Anne Dipchand gently told the Thompsons that the life-saving drugs Robbie had been taking 24 hours a day was a last resort. They had done all they could do.

Finally, on July 20, with Robbie all but in a coma, the Thompsons faced the truth: without a new heart, Robbie would probably not live to see the weekend. At that point, Ron and Sue began to lose hope. "We were talking about where to bury him and how we were going to transport his body back to Courtenay," Ron said.

At 4 a.m. a nurse rushed into the intensive care unit to tell the Thompsons that a heart had been found. Thirteen hours later, Ron and Sue watched their son being wheeled into an operating room, hoping for a miracle.

At 9:31 p.m. on Wednesday, July 21, Robbie’s new heart began beating—at exactly the same time of day he had been born, 18 months earlier. And the left lung that cardiologist Dr. Anne Dipchand had been concerned about inflated on its own with Robbie’s first breath. The Thompsons had found their miracle.

Despite the sleepless nights, the endless hours of pacing hospital corridors and feelings of total helplessness, the Thompsons turned their personal struggle aside in order to mount a crusade to help other patients across the country who are also waiting for transplants.

Ron was the first to admit that if they had been asked about donating Robbie’s organs when the boy was first in hospital, he and Sue would probably have said no. Then they were told by doctors at Toronto’s Hospital for Sick Children that 60 per cent of the children waiting for heart transplants at that hospital die before a match is found because there is a shortage of donors. The Thompsons were instant converts.

"Parents have to discuss now, while their kids are healthy, what they would do if ever a tragedy befalls their children. It’s a pretty tough subject to talk about," he said.

On February 9, Ron spoke to the federal government’s Standing Committee on Health, advocating a unified national approach to organ and tissue donation and transplantation.

"We have a challenge ahead of us as a nation to become the country with the best organ donation rate in the world," Ron wrote in an E-mail to family and friends just before the Thompsons returned home to Courtenay. "Susan and I will continue to promote and encourage awareness; our objective is to ensure that no one in Canada dies waiting for an organ, and no family ever has to wait away from home as long as we have."

The Thompsons’ continued stance on organ donor awareness is one reason they made themselves accessible to the media for the duration of their stay in Toronto.

Photographer Rene Johnston shot about 4,000 photos of the Thompsons throughout their ordeal, including 400 just of Robbie’s transplant operation. A two-page spread in the National Post following Robbie’s transplant showed in photos what the printed word could not—the emotional impact of a transplant operation and preceding wait for an organ.

It is Ron’s hope that Johnston’s photos can be used in a positive manner to promote a national organ donor registry, so families like theirs never have to worry about setting records while waiting for organ transplants.

Johnston became such a close friend to the Courtenay family that one of Robbie’s first words, besides "mama" and "dada" was "annay", for Rene, Sue said.

Now firmly ensconced in their own home, the Thompsons are content to just be parents to an overly energetic almost-two-year-old. After the relative shelter of the hospital, they have had to get used to watching their son grow in leaps and bounds: where he could barely sit up three months ago, he is now learning to walk. He insists on feeding himself, despite still being puzzled by utensils, and always has his hands full—cookie in one, toy car in the other.

"It’s such a transition," Ron said a month after Robbie’s transplant. "We lived in crisis for such a long time."

Robbie will have to go to Toronto’s Hospital for Sick Children for check-ups and biopsies, then the Thompsons will switch to B.C. Children’s Hospital in Vancouver.

The Thompsons’ biggest challenge now is keeping their immunosuppressed son away from the germs of the winter cold and flu season—and chasing him around their home. But they don’t mind; they’ve had enough excitement to last them a lifetime—Robbie’s lifetime.

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National Organ Donation System sought

by Greg Descantes and Sally Greenwood

Patients on Canada’s already overcrowded transplant waiting lists received more bad news last month as Ottawa refused to proceed with a private members bill that would have established a national organ donor registry.

After a first reading in the House of Commons on October 18th, Bill C-227, sponsored by rookie Coquitlam Liberal MP, Lou Sekora, and entitled, "The National Organ Donation Act" was one of 30 bills and motions which went before the Sub-Committee on Private Members’ Business.

Unfortunately, the Sub-Committee did not pick Sekora’s bill as one of the ten bills or motions to proceed to the house to be voted on by Members of Parliament. The Sub-Committee’s meetings are secret and do not reveal their reasons for judgement.

As a result of being deemed "non-votable", Bill C-227 was dropped after a second reading in the House on November 16. While this doesn’t eliminate the possibility of a National Registry or Mandatory Referral and Training in the future, it further delays the creation of what many health experts say is a necessary tool in addressing the low donation rates of a fragmented national organ donor system. Nevertheless, Sekora has pledged to continue to fight the good fight.

In November 1998, Health Minister Allan Rock asked the all-party Standing Committee on Health to "consult broadly, analyze and provide advice regarding the state of organ donation in Canada." In February and March of this year, the Committee heard from more than 120 witnesses including patients, families, provincial governments, transplant centres, medical personnel, physicians, and clergy.

Bill Barrable, CEO of the BC Transplant Society, told the committee on March 11th that a national public education campaign and system of registration, along with mandatory referral and training, which was introduced in British Columbia earlier this year, would dramatically improve Canada’s donation rates.

"Research in B.C. and results elsewhere reveal that potential organ donors are lost because we do not have a clear, simple and unambiguous system to support organ donation in hospitals," Barrable said.

However, the Committee report presented to Allan Rock on April 22 recommended further study. Conversely, Vice-President Al Gore implemented the National Organ and Tissue Donation Initiative in the US last year. This initiative recognizes mandatory referral and training supported by a national campaign for registration as the essential elements necessary for a national strategy.

In September, provincial health ministers met and agreed to establish a national transplant council and called on the provinces to come up with business plans. Rock applauded the efforts of both groups and endorsed the idea of a national council.

Sekora, on the other hand, called the national council a stalling tactic that would only lead to more bureaucracy. Reform Party health critic, Dr. Keith Martin, called the request for more study "a slap in the face to the thousands of people on waiting lists."

Rock said the Committee did not have the opportunity to fully explore the financial implications of a national system of registration. He also said, "These developments represent a quantum leap in the organ and tissue donation issue, which I put on the national agenda, referring it to the health committee a year ago [Nov.1998.]"

Martin, whose motion, M-222, which included the establishment of a national registry, was passed by the house on Oct. 9, 1997, said, "we’ve had years to look at this issue. The time for study is over."

While the BCTS views the Federal Government’s initiative as a positive step, it also recognizes that actions speak louder than words. "We continue to encourage both Minister Allan Rock and other Members of Parliament to consider a public-private partnership to support a "virtual" national registry through an effective national public education campaign. Through expressed private sponsorship and today’s technology; the linking of websites and databases, we could develop a very effective "virtual" National Registry and a National Awareness Campaign with out additional cost, " explains Barrable.

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Donor Recognition Ceremony validates the gift of life

by Angela Wattie

When we, the families of recent organ donors, gathered at Cecil Green the day after Thanksgiving, we participated in a ceremony which, by hosting us, paid tribute to the loved ones we had lost. This honour was probably the deepest and most lasting impression we came away with. The individual medals, videos, roses, gracious location, and generous refreshments all elevated and redeemed our tragedies because they honoured the transcendent humanity, the magnanimous reaching out into the greater community, implicit in organ donation. In the face of death and loss can reside life and gain.

On a practical level the ceremony brought together donor families, representing those who gave the gift of life, members of the British Columbia Transplant Society, representing those who facilitated the donation and the Lieutenant Governor of British Columbia, representing specifically those who received organs, and generally the people of the province—all sides of the equation. A considerable feeling of solidarity existed. As each family received from the Lieutenant Governor a medal commemorating the individual donors, we felt our own personal loss, but we knew we were not alone. We listened to the story of one baby boy’s heart transplant, substantiating why we were there. We rejoiced with the boy’s family, and smiled again; and afterwards, we had the healing opportunity to share our donor’s stories with one another, and to ask questions of the Transplant Society’s representatives and receive answers and information.

For some of us it reconfirmed our desire to promote the aims and work of the Transplant Society. When we left, we did not leave empty-handed, but took with us a unique video, that recognized the organ donors honoured that afternoon, and a yellow rose—signifying friendship. My, now-dried, rose rests beside a photograph of my son—in tribute and remembrance.

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Foundation supports transplant research

Established in 1992, the BC Transplant Foundation raises funds for research in the field of solid organ transplantation. Funds are intended to facilitate scientific investigation in the fields of basic science, epidemiology and organ availability, social sciences and ethics.

Following an annual call for proposals, applications are evaluated using a rigorous peer review process. For this purpose, the Foundation has formed a strategic alliance with the BC Health Research Foundation (BCHRF), an organization that currently operates a well developed and respected peer review system.

1998/99 was another successful year for the Foundation, as it marked the second straight year that it supported the actual conduct of transplant-related research in its eight-year history. Six separate projects are now supported either directly, or indirectly through the partnership with the BC Health Research Foundation. Total funding for these research studies is $423,000.

Funded projects currently underway are:

The Foundation also supported a study by Dr. Lynn Stothers to increase organ donation in BC. Her study, "A Prospective of Audit Deaths in Intensive Care Units," is now complete and has provided valuable information for the BC Transplant Society to formulate future strategic plans.

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Clinical Trials...rejecting rejection and more

The Clinical Trials Program is the Society’s most established research component. Its aim is to provide opportunity for improving treatment outcomes to enhance the quality of life for transplant patients through innovative therapies, along with increasing the proficiency of Canadian researchers in the field of transplantation. A trial investigates the effect (toxicity and efficacy) of drugs in humans.

The department conducts multi-centre trials with sponsorship from industry partners including Fujisawa, Hoffman-LaRoche, Novartis Canada Inc., and Wyeth-Ayerst. All costs, including staffing, incurred during a clinical trial are funded by independent sources and administered through the BCTS Finance Department.

Clinical Trials receives a protocol from the sponsor requesting a trial. Approval must be given by the Health Protection Branch (HPB), prior to initiaiting a trial.

Ethical approval for the trial must be cleared by the Ethics Committees at participating hospitals. Once ethics approval is received, a financial contract is drawn between the sponsor and BCTS.

The Clinical Trials group coordinates the administrative, regulatory, and clinical aspects of the program. They work closely with physicians, nurses, and other hospital staff to ensure that studies are conducted according to the requirements of each protocol, and to other applicable regulations.

Many transplant recipients, who reside in BC, may be eligible to participate in a trial. A patient’s eligibility is determined by a set of inclusion/exclusion criteria that are specific to each product

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Transplant research gains higher profile

by Ken Donohue

On December 9th, Transplant Researchers will descend upon the Plaza 500 Hotel in Vancouver for the 3rd Transplant Research Day. Last year about 90 people attended the day-long forum, and organizers are hoping for the same this year.

The Transplant Research Day germinated from an Experimental Biology Day that Dr. Karim Qayumi, a Surgeon and Associate Professor at UBC had organized. "We wanted to expand the Biology Day to focus on transplant related research," says Dr. Stephen Chung, BC Transplant Society Scientific Director, and one of the organizers of the Research Day. "It is important that we increase the profile of transplant research."

This year’s session will include two key-note speakers. Dr. Jonathan Bromberg, Director of the Kidney/Pancreas and Gene Therapy programs at Mt. Sinai Medical Center in New York and Dr. Wilfred Jeffries, with the Immunology Department at UBC, both are internationally recognized researchers in their respective fields.

Various researchers will post their work in an exhibition-like setting that will allow researchers and students to interact and encourage collaboration. "The first two years we had a difficult time getting enough abstracts, but this year we have more than enough…it is very positive," says Dr. Chung.

Transplantation is a relatively new and growing field, thus transplant research is extremely important. "Transplantation is the one thing in medicine that will cure a disease," says Dr. Chung. "There is no question we are making a difference, but there are issues that will arise and they need to be addressed. This can only be done through research."

As any researcher will know, research dollars are scarce. Dr. Chung says the Provincial Government provides virtually no research dollars and the Federal Government has a renewed commitment to research funding but it only brings it back to previous levels before major cuts. The only clearly defined fund for transplant research is the BC Transplant Foundation.

The Transplant Research Day is open to the public and begins at 7:30 am. For more information, please contact the BC Transplant Society at
(604) 877-2100.

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Living Anonymous Donation Study

by Sally Greenwood

Five hundred and fifty-nine (559) people are currently awaiting a life-saving or life-enhancing transplant in BC. Of those 512 are on dialysis and awaiting a kidney transplant. Despite an increase in Living Donor kidney transplants, up 55% over last year, the average waiting time for a kidney transplant continues to increase.

In 1997, the BCTS conducted a Mark Trend Survey to analyze public attitudes towards organ donation. One of the areas covered was one’s willingness to donate a kidney to specific individuals. As you may expect the results reflected that most individuals were willing to donate a kidney to a loved one ( table 1). However, we also asked the question would you be willing to donate a kidney to a stranger? The response may surprise you. Thirty-two (32) percent of those surveyed said that they would be willing to donate a kidney to a stranger. It is this finding, together with occasional unsolicited offers of a kidney from members of the public, that has provided the impetus for BCTS to research the concept of Living Anonymous Donation.

Although these results indicate a willingness of some people to donate a kidney to a stranger, the BCTS does not create policy based on one survey, but only after in-depth consideration of the issues. Therefore, with external funding, BCTS is embarking upon a two-year study to explore alternative donor sources—specifically to determine whether or not this type of donor pool realistically exists.

This study represents potentially ground-breaking research. It is the first such study looking at the emerging area of Anonymous Living Organ Donation in transplantation. If in fact, after potential donors fully understand the process of donating a kidney—the evaluation process, the surgical procedure, the recuperation time—results indicate that people are willing to donate, researchers will then begin to evaluate the motivation of these donors and ultimately begin to develop a program to utilize this donor source. If however, once fully interviewed, results indicate that no such donor pool exists, BCTS will have the necessary information to disprove this idea and can move on to discover other ethically viable donor sources.

On average, BCTS staff receive one to two calls per week from people offering to donate a kidney to a stranger. "Our goal now is to determine if these people, once they understand what is involved in the donation process, exist in larger numbers and if so, what motivates them?" explain Co-Investigators, Antonia (Toni) Henderson and Monica Landolt.

"Are they motivated by altruism or some kind of psychosocial instability? Part of what we may find is that there are good reasons and not so acceptable reasons to donate," Henderson and Landolt explain.

"If this study reveals what we hope, in five to ten years it may be possible to eliminate our waiting list entirely for all but heart transplantation, without resorting to xenotransplantation (animal to human). It may also lead to a whole new level of public involvement in organ transplantation," say Bill Barrable, CEO, BCTS.

This three phase study will begin with a large scale community survey in the Lower Mainland and outline under which conditions people are willing to donate; Non-Donors, Living Bonded Donors (Living Related), and Living Anonymous Donors. After the three groups are identified and the goal of 150 participants is attained Phase Two and Three will explore the further differences of these three groups and develop the psychological profile of the Living Anonymous Donor (LAD). Psychological well-being will be examined and the individuals’ attitudes about living kidney donation will be studied in-depth. Throughout the entire study an ethical analysis will be conducted by Dr. Michael McDonald.

This is an exciting time in the realm of organ donation and transplantation and it is another example of the BCTS looking outside the pre-existing donor pool and encouraging creative and viable alternatives for British Columbians awaiting transplants.

The results of this study will not be available for several years and it should not in any way dissuade anyone from pursuing living related or emotionally related kidney donation. At this time it is not a replacement for cadaveric or the existing kidney donation program.

Dr. David Landsberg M.D., Head Section of Medicine BCTS/UBC

Antonia Henderson, PhD, Research Associate, BCTS

Monica Landolt, PhD, Research Associate, BCTS

Michael McDonald, PhD, Director, Centre for Applied Ethics, UBC

John Soos, PhD, Clinical Psychologist, VGH

Dr. Bill Gourlay, M.D., Surgical Director/Renal Transplant BCTS/SPH

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Universal Referral and Training

Aimed at increasing organ donor rates in British Columbia, the provincial government, in cooperation with the BC Transplant Society, introduced Universal Referral and Training legislation. Regulations governing
Universal Referral came into effect on April 1, 1999.

Universal Referral and Training was spawned from a similar program that was introduced in Pennsylvania, by the Delaware Valley Transplant Program (see statistics Organ Donor Rates). Within three years donor rates in that state increased by nearly 50%, and continue to produce donor rates that are significantly higher than other jurisdictions.

With the declining cadaveric donor rate, the BCTS is the only Canadian jurisdiction that has taken steps to implement comprehensive legislation to address this crisis.

Universal Referral requires that all deaths up to and including 75 years of age be reported to a 1-800 number, a telephone line dedicated to donor referrals from the hospitals. This includes all cardiac and brain deaths.

For terminal patients who are being sustained on a ventilator, the hospital staff is required by law to call in the referral prior to the time mechanical ventilation is discontinued. This will give BCTS the opportunity to assess the patient’s potential for organ and tissue donation.

Following a screening process, if the patient is determined to be a suitable potential donor, the Organ Donor Registry will be accessed by the hospital staff to see if the patient has registered their wishes regarding organ donation. All attempts will be made to honour these wishes. The next of kin will be approached by Designated Requestors to validate the potential donor’s wishes or in the absence of ODR registration, to give consent for organ donation.

Universal Referral will apply to all hospitals in British Columbia with ventilator capability (approximately 40 hospitals). A four-phase approach was initiated throughout 1999, so that hospital personnel could be educated on the new legislation. All hospitals will be on line by January 2000.

Training

If a potential donor has not registered their wishes on the Organ Donor Registry, the patient’s family will be approached for consent. One of the most important aspects of the organ donation process is the support of the family of the potential organ donor.

Studies have shown that the manner in which families are approached goes a long way in their decision. The new legislation addresses this by requiring in-depth training to those who will be dealing with the family in the consent process.

To date, BCTS has provided three two-day workshops, which have trained 72 hospital staff throughout the province. With the assistance of these Designated Requestors, BCTS will train more professionals (Registered Nurses, Social Workers) within these facilities to meet the requirements of donor families and the people waiting for transplant.

• improves organ donor rates

• gives everyone the opportunity to become an organ donor

• ensures we receive all potential referrals

• guarantees that families are approached consistently through the
Designated Requestors

• will eradicate the cornea waiting list

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