The Antolins were devastated when their seemingly healthy four-year-old, Christopher, died of heart failure after just a few days of flu-like symptoms. Fear encroached on their pain when they learned the child had suffered from a rare inherited disorder, propionic acidemia, which meant their three remaining sons were at risk, too. Paul and Cvetka Antolin’s boys, Matthew, 8, Robert, 7, and Stephen, 5, were tested right away. The results came in the day they buried Christopher. “We got a call from the hospital that said we had to be in the next morning,” says Cvetka, “because Matthew was living with the critical illness.”

The good news: Matthew was mostly asymptomatic. Medication helped with the propionic academic, which prevented his body from properly processing certain parts of proteins and some fats, causing organic acids to built up in the blood, urine and tissues, and damaging organs, including the heart.

But, for the most part, he was able to live a normal, independent life. He became a hard worker who was eager to give back, volunteering his time to charities and school initiatives. It wasn’t until he was a 22-year-old undergrad at Dalhousie University in Halifax, miles away from his family in Toronto and halfway to completing his engineering degree, that things started to go wrong. “He thought it was a cold,” says Paul. “He kept going to doctors and they said, ‘Your chest looks clear.’” More than three months passed before Matthew was diagnosed with heart failure and able to head back to Toronto, where he was placed on the transplant list. After taking a break from school, he regained some heart function, then he returned to university to complete his degree, all the while knowing he would need a heart transplant someday.

Two years later, he ended up at the hospital again, this time with appendicitis. His appendix burst, leading to multiorgan failure. Matthew was given a mechanical heart to keep him alive and put back on the transplant list. After spending two months at Toronto General Hospital in intensive care and two more in the cardiac wing, life seemed to return to normal. Matthew looked and sounded well. He attended his high school reunion and parties in the lead-up to Christmas. He never slowed down to feel sorry for himself, but the wait for a heart was torture for the entire family.

During his time in the hospital, Matthew’s room faced a rooftop helipad at The Hospital for Sick Children. “You’d see a helicopter come and you’d think, Is this the helicopter that’s carrying organs?” recalls Paul, his voice breaking. “It’s a morbid way to live.”

A heart never came. On Dec. 16, 2012, Matthew was killed by a brain aneurysm caused by the blood-thinning medications that treated his heart condition for years. He had been on the transplant list for four months when he died at the age of 27.

Matthew was one of 256 Canadians who died that year while waiting for an organ transplant. While more than 2,000 people received organs, 3,500 more waited for organs that could give them a second chance at life. And those numbers don’t represent the many people who pass away without ever making the lists; the limited availability of organs necessitates tight restrictions on who is eligible for a transplant.

Within a week of Matthew’s death, several of Robert and Stephen’s friends held a wake in their brother’s honour. When Robert walked in, he saw a computer that friends had set up near the front door so that guests could sign up to be organ donors. “I was so incredibly touched,” says Robert.

How to become an organ donor
Organ registration, and talking to family members about your desire to donate, is crucial to solving the shortage. Ninety percent of Canadians support the concept of organ donation, but fewer than 25 percent have registered to be donors. While some don’t know how to register (visit organsandtissues.ca register to learn how to register in your province), others just haven’t got around to it or would simply rather not contemplate their own mortality.

But when tragedy strikes, registration could make all the difference to the family members who are tasked with making a delicate decision at an extremely difficult time. “Everybody is upset, and suddenly, you’ve got people asking whether they will donate the organs and expecting a rational decision,” says Dr. Eric Yoshida, professor of medicine at the University of British Columbia and senior member of the liver transplant program at Vancouver General Hospital.

How organ donation works
Organ donation typically becomes an option when someone suffers a catastrophic attack or trauma, such as a stroke or a car accident, that leaves the person neurologically dead (meaning brain function has entirely and irreversibly ceased, and functions such as breathing no longer occur naturally—which is different from a vegetative state). Some people may also be candidates for organ donation if they’ve experienced cardiac death (when the heart has irreversibly ceased beating). “Before, cardiac-death organs were not used, because it was thought they didn’t get enough blood flow,” says Dr. Yoshida. “But with the resuscitation techniques and preparedness, that’s not necessarily the case now.” Doctors determine whether an organ is healthy enough for donation on a case-by-case basis. In any event, the discussion about organ donation will not arise, says Dr. Yoshida, “until doctors have concluded that there is absolutely no way the patient will survive.”

Typically, a transplant coordinator will consult the registry and tell family members if their loved one is registered to be an organ donor. But, ultimately, the decision to donate is up to the family, who gives final consent. Upon agreement to donate, viable organs are surgically removed by a transplant team, then distributed to matching patients who urgently need them and, in many cases, have been on a transplant list for a long time.

One donor can save up to eight lives with tissue and organ— heart (or heart valves), lungs, kidneys, liver, pancreas, intestines and stomach—donations. A donor can also enhance the lives of up to 75 others with the donation of corneas, bones, tissue and more.

What happens after an organ transplant
Those who do receive a transplant usually go on to live full and healthy lives. Dr. Aubrey Goldstein, a retired physician from Saint-Vincent Hospital in Ottawa, spent two years on the transplant list. He almost bled to death twice due to complications with primary sclerosing cholangitis, a disease that affects the liver’s bile ducts, but finally received the liver he needed on May 10, 1998, at the age of 44. Since his transplant, Dr. Goldstein, now the president of the Canadian Transplant Association, returned to his job as a chronic-care physician, got married and competed in the Canadian and World Transplant Games (Olympic-style events for transplant recipients that draw awareness to organ donation), winning more than 20 gold medals. His family was so moved by the donation that his wife recently became a living donor, giving one of her kidneys to a friend in need.

Through his transplant centre, Dr. Goldstein took the opportunity to write to his donor’s family members (whose identities were kept confidential), telling them about his new life. “I wanted to thank the family for making the decision to donate their loved one’s organs at a time of such grief and tell them I’ve used their gift to the maximum potential,” he says.

For the families of donors, knowing that their decision saved lives can help them through a difficult time. Dr. Yoshida helped conduct a study on the psychological effects that deceased organ donation has on families, and the results were very encouraging. “It doesn’t traumatize them at all,” he says. “It leaves them with a good feeling that, out of this tragedy, many lives were saved.”

Unfortunately, many families don’t talk about organ donation until faced with tragedy, because they don’t want to deal with the “what ifs” surrounding their own deaths. As a result, more families like the Antolins end up having much tougher discussions: What if the heart we need never comes?

Now the family starts that conversation with others. They share Matthew’s story through Outlive Yourself, an organization they launched to promote the 2012 awareness-raising cross-Canada bike ride by Matthew’s friend Cayse Ruiter. On the campaign website, Robert writes, “Matt was my brother, and every day I think about how different my family’s lives would be if he were still around.”

“There is a tremendous disparity between organ need and organ availability,” says Dr. Yoshida, noting that, at the time of the interview, 40 people in British Columbia were waiting for livers, yet one hadn’t become available in nearly six weeks. “People are dying on the waiting list.”

It’s a reality the Antolin family knows too well. “Twenty years ago, we had four kids and lots of big dreams,” says Cvetka, with tears in her eyes and her two remaining sons sitting nearby. “And if you walk the halls of the hospital, there are many stories like ours. They wait, and to sit and wait is difficult. It’s torture."

If you or a loved one are staying overnight at a hospital, here are some tips to make your stay as stress-free as possible.

This story was originally titled "Our of Time" in the January 2015 issue. Subscribe to Canadian Living today and never miss an issue!