Canada's first heart transplant 'revolutionizes' heart transplants

Lorraine explained how she had donated blood 121 times by the time she was 40, when she was admitted to intensive care at Kingston Health Sciences Centre with a brain aneurysm, while Dirk, himself an organ transplant recipient, said Robbie had witnessed the life-changing impact his new kidney had.

They were distraught when doctors told them that this was not possible: Robbie could donate other organs and tissues, but if the life support was turned off, his heart would stop and he would die.

“I was shocked when I found out his heart couldn't be used,” Lorraine said.

The parents begged again: they refused to let Robbie's “kind heart” go.

Earlier this month in Kingston, Robbie Sherren's heart underwent a procedure never before performed in Canada. Moved by his parents' pleas, medical teams at Kingston Health Sciences Centre (KHSC) made plans to bring in a specialized surgical team from the United States. Using a machine that mimics the human body, doctors kept Robbie's heart warm and beating during transport, making it usable again.

Dr. Sam Chemie, medical director of the pediatric intensive care unit at Montreal Children's Hospital at McGill University Medical Centre, said the procedure will significantly increase the country's pool of heart donors.

“This is a milestone for families who want to donate organs and help as many people as possible. It's also a major milestone for patients on the transplant waiting list.”

Little did anyone know that Robbie was in grave danger of suffering an aneurysm that could have taken his life.

But looking back, Lorraine says it was clear something was wrong: The bowling skills she'd honed over years of practice had faded over the winter.

“It was like his brain was starting to deteriorate,” she said.

Robbie was born with hydrocephalus, a condition that causes excess fluid to build up in and around the brain. He had developmental disabilities and lived with his parents, but Lorraine says he was “functioning at a high level.”

When she and Dirk talk about Robbie, the couple recites the many things their son loved: the Ottawa Senators and the Irish singing group Celtic Thunder. Star Trek (like his father, he considered himself a Trekkie). At last count, his film collection numbered 675 DVDs.

On Thursday nights, Dirk went bowling with Robbie and his brother Jamie, who also has autism. They were on a five-pin league team, and Robbie was consistently scoring 220-230 points. “If you know how to bowl, that's pretty good,” Lorraine said.

In February, Robbie won a silver medal at the Special Olympics Canada Winter Games in Calgary, matching the gold he won four years ago in Thunder Bay, when his skills were at the peak.

A photo taken during that competition, with Robbie in the center, is one of Lorraine's favorite memories.

“That's what Robbie is all about – focusing on the shot.”

Before Robbie came along, hearts in Canada could only be donated by brain-dead patients.

Donors are declared dead based on strict neurological criteria, but life support machines keep the donor's body alive and healthy enough to donate their organs.

Chemy, who serves as medical adviser for organ donation system development at Canadian Blood Services, said if a hospitalized patient's heart stops at the time of death, the heart will be damaged and the organs will be unsuitable for transplant.

But in some countries, including Britain, Australia and the United States, teams of doctors have learned how to retrieve and donate stopped hearts and restart them after death.

Instead of the procedure for organ donation after brain death, where the donor's heart is kept on ice, the organ is hooked up to a perfusion machine that keeps it warm and beating. This “heart in a box” keeps the organ pumping the donor's own blood, ensuring it receives oxygen and nutrients.

This process allows time for the heart to be transported to a patient in need, Shemy explained.

Since 2006, patients have been able to donate other organs, primarily kidneys, after death from cardiovascular, or heart, disease. In Ontario, this type of death currently accounts for 30 per cent of organ donors in the province, according to the Ontario Ministry of Health, the provincial government agency that oversees the Trillium Gift of Life Network, which handles organ and tissue donations.

In other countries, “hearts in boxes” open the door to many more potential donors. US medical team Heart transplant patients have also been shown to fare similarly well.

Heart donation after circulatory death is not only “technically complex,” but also involves challenging logistics, Chemy said.

“But it clearly works and will increasingly benefit Canadians on transplant lists.”

Two weeks before his death, Robbie had gone to KHSC's emergency department to be checked for a broken or sprained ankle and collapsed while waiting.

“The next thing I knew he was in intensive care and they told him he had an aneurysm,” Lorraine recalled.

“Things just went from bad to worse from there.”

Robbie was diagnosed with a ruptured brain aneurysm, causing bleeding around the outside of his brain.

Initially, he did well in intensive care, but within days Robbie's condition began to deteriorate: he suffered multiple strokes, causing severe swelling and further damage to his brain.

Dr. Gordon Boyd, a neurologist and intensive care physician at KHSC, said it was clear he would never recover.

“When I told my family about it, they immediately asked me about organ donation.”

But even though Robbie had severe brain damage, Boyd said he did not meet the strict clinical criteria for neurological death, meaning he would be declared dead after life support was turned off and his heart stopped — a process that would normally disqualify a patient from becoming a heart donor.

Boyd said once the hospital team realized Lorraine and Dirk were desperate to donate Robbie's heart, staff and administrators worked with the Ontario Health Authority to overcome the necessary hurdles and coordinate with a surgical team in the United States who had experience using perfusion machines and could bring over the necessary equipment.

It was this team that retrieved Robbie's heart and shipped it to a facility in the United States for transplant.

“That was the fastest hospital administration I've ever seen,” Boyd said. “Everything was in place within 24 hours.”

In a statement to the Star, the Ontario Ministry of Health said the organ donation “presented a collaborative opportunity for Ontario doctors and clinicians to observe and learn from experienced U.S. organ harvesting teams equipped with specialized equipment.”

The department explained that assisting with the process in the state will require “significant training and coordination among many individuals and organizations.”

The department did not provide a timeline for future heart donations following neurological death, but said it recently issued a request for proposals to secure the technology and training.

Boyd said about 43 people in Ontario are waiting for a heart transplant and are at high risk of dying while waiting.

“If we can get another 10 to 12 people off the heart transplant list, it's a really amazing opportunity to save their lives.”

Late in the morning on May 7, Lorraine and Dirk were preparing to say goodbye.

The US team had arrived in Kingston and was waiting in a nearby operating theatre, ready to perform the heart removal.

Once the life support was turned off, Lorraine and Dirk stayed by their son's side and waited together until his heart stopped.

After another five minutes, the medical team wheeled Robbie into the operating room, his parents walking alongside the gurney the whole time.

“They stopped at the door and we all had a moment of silence,” Lorraine recalled. “I said my final goodbyes and then he left.”

Boyd said ICU staff were deeply moved and “everyone in the room was in tears.”

A week later, Lorraine said she heard the transplant was successful and her grief was eased, knowing Robbie had saved her life.

“For us, it made a huge difference,” she said. Robbie has also successfully donated a kidney, and Lorraine and Dirk hope some of his eyes and tissue will also be of use to recipients.

Dark said being part of Canada's first organ donation will be Robbie's legacy.

“We are being told that this process is just the beginning and there will be many more candidates coming forward. And it started with the lobby.”