Hearts. Everybody has one. But not everyone is born with one that works.

Twenty-five years ago Dr. Wilbert Keon performed Canada’s first infant heart transplant, marking the beginning of an evolution in the procedure and accompanying treatment that gives Canadian babies born with serious heart problems a chance at a life they wouldn’t otherwise have.

Mandy Johnson works with Children’s Heart Network, a Vancouver-based support group for families of children with heart conditions. She remembers the announcement of the first transplant and what it meant for her clients who previously would have had to travel to the U.S. for the surgery.

“For the families it’s huge. They’re dealing with a medical system they don’t understand and a very, very sick child,” said Johnson. “And, at the time, when they came back it was all so new, all the transplant care had to be coordinated as well. It was very challenging in those early days.”

After the first one in 1989, transplants began happening regularly in Toronto and then in Edmonton. In October 2013, the B.C. Children’s Hospital in Vancouver announced the opening of a cardiac transplant program, which means Johnson’s B.C. clients can now stay even closer to home.

Anything that helps make the experience easier is welcomed. Unlike adults or older children, infants under nine-months can receive heart transplants that are incompatible with their blood type and their body is much less likely to reject the heart because they haven’t built-up antibodies yet. However, Dr. Anne Dipchand, head of the cardiac transplant program at Toronto’s Hospital for Sick Children, says infants are at a higher risk of dying while waiting for or during the surgery.

Once they have the heart, infant survival rates are high compared to older recipients. But even that creates new challenges, such as side effects from anti-rejection drugs and delayed development.

“Long ago when you were worried about keeping them alive, that wasn’t necessarily the focus. But now lots more of them are surviving and we have to find ways to address things that are more important for quality of life,” Dipchand said.

It is a problem Kelsey Anderson is grateful to have. Her son Grayson was only two-days-old when he was put at the top of the heart transplant list. The Calgary family watched their new baby struggle to survive for almost seven months. Then, at 1:30 a.m. on April 2, 2013, the phone rang. Anderson says the transplant couldn’t have come at a better time.

“He really was going downhill and probably wouldn’t have made it another week,” said Anderson.

Her son was rushed to the Stollery Children’s Hospital in Edmonton to get the transplant. When Anderson saw Grayson after the surgery, the new heart was already making a difference.

“He was always blue before he got his heart and when we first saw him he was pink for the first time.”

Before the month was over, Grayson was out of the hospital and living at home. Almost a year later his prognosis is good: according to the Pediatric Heart Transplant Study Foundation international statistics, over 50 per cent of babies are alive 19 years after their heart transplant.

The limited number of infant heart transplants in Canada means agencies are unable to report exact recent numbers as it can be identifying. However, the Trillium Gift of Life Network reports that from 2003 to 2013, there were 89 heart transplants performed on patients aged five and under in Ontario. There are currently eight patients under the age of 18 waiting for a heart transplant in Ontario.

Documentation

“1989: New Heart for Newborn Baby”

1. This is a CBC video report from September 1989, documenting Wesley Behm, the first Canadian infant to receive a heart transplant, leaving the hospital only a few weeks after the surgery.

2. I found it in my general search for events that happened in 1989. I am interested in health stories, so I Googled ‘health’, ‘Ottawa’ and ‘1989’ and this showed up on one of the results pages.

3. It was helpful because it gave me my general story idea and also the names of the original key actors and institutions where I started my research into what happened and how it the story developed since the original event.

“Pray for Baby Grayson”

Click here for link to Facebook page.

1. This is a Facebook page documenting the experience of a Calgary baby named Grayson Anderson who received a heart transplant last year. It is run by his family, who started it as an online venue during Grayson’s seven months of waiting to recieve a transplant. They have continued to update it with reports about Grayson’s progress and current health.

2. I found this while looking for families who had recently been through the experience of having an infant who received a heart transplant. I Googled “2013” and “Baby heart transplant Canada” and this came up in the search results.

3. This page was helpful because I was able to identify a person who had the exact experience I wanted to include in my story. It was great that it was a social media site because I was able to reach out to Grayson’s mom, who got back to me and agreed to an interview the next day.