The drama that unfolded in a Toronto hospital as the lives of two infants hung in the balance in the second week of April 2009 gripped the nation.

Lily O'Connor, born March 9, 2009, with a congenital heart defect that robbed her blood of oxygen, lay seriously ill at Toronto's Hospital for Sick Children. Her only option for survival is a heart transplant.

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Kaylee Wallace suffers from a rare brain abnormality that could cause her to stop breathing, but she continued to do so after she was removed from a respirator. ((Family photo))

At the same hospital, the parents of two-month old Kaylee Wallace were coming to terms with the impending death of their daughter. Kaylee was born with Joubert syndrome, an extremely rare brain abnormality that could cause her to stop breathing during sleep.

Kaylee's parents, Jason Wallace and Crystal Vitelli, understood that without a machine to help her breathe, Kaylee's heart would eventually stop and she would die. They decided that Kaylee's heart should live on and give Lily a chance to live a healthy life.

The process under which Kaylee's heart would be removed is called donation after cardiac death (DCD). The heart has stopped, but there may still be brain activity. In the early days of transplants, organs harvested through this method were often not in good shape. Success rates weren't high, so doctors switched to neurological determination of death (NDD) — which occurs when there's no longer any brain activity.

In February 2005, a national forum was convened to discuss and develop recommendations on the principles, procedures and practice related to DCD, including ethical and legal considerations. There was a consensus that Canada should resume harvesting organs under DCD in addition to NDD. It was estimated that procuring organs this way would increase the number of available organs by 20 per cent.

A year-and-a-half later, a paper published in the Canadian Medical Association Journal outlined national recommendations for donation after cardiocirculatory death. The report said before considering DCD donation, the patient should be judged to have:

  • A non-recoverable injury or illness.
  • Dependence on life-sustaining therapy. 
  • Intention to withdraw life-sustaining therapy. 
  • Anticipation of imminent death after withdrawal of life-sustaining therapy.

But when Kaylee's respirator was removed on April 7, she continued to breathe on her own, surprising her parents and the transplant team waiting to go to work.

The next morning, Dr. Jim Wright — the surgeon in chief and chief of perioperative Services at the hospital — emerged to say that Kaylee was no longer being considered as a suitable donor.

Lily remained at the top of the transplant waiting list.

While the story played itself out in front of television cameras in Toronto, dozens of other transplant patients were going through their own personal dramas far from the media spotlight.

Waiting for their own miracles

In 2008, 4,380 Canadians were waiting for a transplant of some kind. Of those, 215 died before donor organs could be procured.

In May 2007, the Canadian Medical Association Journal called for a "national registry and mechanism for allocating organs to ensure equity of access." It cited a study that showed that people under the age of 40 who lived in Ontario waited a median of eight years for a new kidney, while for those in Alberta, the median wait was three years.

In addition, it found that Canada's rate of organ donation seriously lagged that of several countries. In 2005, the donation rate for deceased donors was 12.8 per million. That's just over a third the rate in Spain (35.1 per million) and around half that of Estonia (26.5 per million), Belgium (22.8 per million), the United States (21.5 per million), and Italy (20.9 per million).

George Marcello was near death while he waited for a liver transplant in 1995. Today, he's healthy and spends much of his time raising awareness for the need for donors through his Step by Step organization. He says Ontario and B.C. have organ donation registries and most other provinces provide the opportunity to sign up for organ donation through a driver's licence or health card. But this still leaves it up to you to act.

"The most important step is to have a discussion with your immediate family," Marcello told CBC News. "They're the ones that are going to be approached, and it will probably be during a tragic time, and they have to be as prepared as possible to say yes [to donating your organs] … and if they're not prepared, they're probably going to say no."

Marcello says registries are helpful but you still need to have that discussion with your immediate family. He notes that 23 European countries use an "opt-out system" for organ donation. They assume you want to donate your organs unless you've expressly said you don't.

Marcello adds that most studies show that 90 per cent of Canadians want to donate their organs, but the system is too complicated.

"We have to reform our system because our system isn't friendly and Canadians lead very busy lives … you might put it off and you might not ever get around to having that discussion with your family."

Marcello notes that some people believe that age or illness may prevent them from becoming an organ donor. He says, that's not necessarily true.

"Everybody is an eligible donor. There was a case of a 102-year-old great grandmother who donated three of her organs. People think that they can't donate because they have this disease...  The doctors are trained to screen organ and tissue they're going to transplant. They're going to make sure it's not contaminated or defective."

The Canadian Council for Donation and Transplantation was set up in 2001 to improve Canada's organ donation system. In August 2008, federal, provincial and territorial ministries of health announced funding of $35 million over five years to merge the council's activities with Canada Blood Services in a bid to improve organ donation and transplantation across the country.

On Feb. 12, 2009, Canada Blood Services announced the Living Donor Paired Exchange Registry, which is designed to facilitate kidney donations among live donors.

The registry is the first project under Canada Blood Service's new Organs and Tissues Division.

Lily eventually got her heart at Toronto's Hospital for Sick Children — more than two months after the high profile drama unfolded.