Mother of toddler who received a heart transplant urges everyone to say yes to donation

"It's a huge gift," Kali Dawson says when she thinks about the impact a heart transplant has had on her two-year-old son.

John was Dawson's third child with her husband Chad. The baby's first year went much as his parents expected, with no indication anything was wrong. But shortly after his first birthday, John caught a cold that wouldn't go away.

"He couldn't seem to fight it off. He started having difficulty breathing. His lungs were filling up with fluid," said Dawson.

There were weeks of uncertainty, and many trips to the emergency department from their home in Summerside, P.E.I. Finally, his situation reached a crisis point. An EKG revealed John was in end-stage heart failure. He was airlifted to the IWK Health Centre in Halifax, and then the Hospital for Sick Children in Toronto.

The diagnosis was dilated cardiomyopathy, an enlarged heart.

"At the age of one, his heart was the size of a teenager's or young adult's. That's how large it was. You could see it beating out of the sides of his chest," said Dawson.

Treatments failed, and John's only hope was a transplant. The Dawsons waited a year, which is about the average time for a child's heart transplant, not knowing if their son would survive until a heart became available.

"Every day you go into the hospital and you wonder: 'Is today going to be the day? Is he going to make it another day?'" said Dawson.

"That's what every day was like for us for almost a year."

'So many people saying no'

Waits like this for a donor organ could be shorter if it weren't for a continuing reluctance on the part of many. The manager of P.E.I.'s organ and tissue donation program, Angela Carpenter, said there are a "shocking" number of Islanders who have actively said they do not want to be organ donors.

There are about 70,000 people on the provincial intent-to-donate registry, where people can either opt in or out of organ and tissue donation. About 23,000 of those people have said no.

"It's a really high number when you look across Canada. And I'm not really sure why we have so many people saying no," Carpenter told Island Morning host Mitch Cormier, adding that the program doesn't do any follow-up with those who have opted out.

"But we do have two-thirds of the people on the registry saying yes. So that's good news."

According to Health P.E.I., there were 11 Islanders waiting for organ transplants as of the end of March. Over the past decade, 15 deceased Islanders have saved 43 lives through organ donation, while 81 other Islanders have had life-changing transplants.

"I've had people ask me … 'Does it really make a difference?' It's a huge difference," Dawson said. "It's life and death in a lot of cases."

And it's not just life and death for the recipient, she said.

"When one person is sick, the entire family is sick, and we really felt that — the parents, the grandparents, the extended family," she said.

"He has two siblings at home that are asking us every day 'When is John coming home?' 'Is John coming home?' They're also trying to understand."

Raising other people up

In fact, whole communities can be affected. Dawson said she felt the support of the entire province while she was waiting in Toronto for news that a heart was available for John. 

The knowledge that there were people willing to give, and messages from people saying they heard about John and had decided to become an organ donor, brought them comfort.

"'Our son is in a hospital bed, but maybe there's a possibility that he's helping raise other people up out of hospital beds.' At that time, that was enough for me to keep going," said Dawson.

She confesses it wasn't until she saw her son hooked up to an IV pole that she took the time to go to the provincial intent-to-donate registry and sign herself up.

"If you have that opportunity and you're able to do that, that is the greatest gift that you can ever leave behind," she said.

"One organ donor saves multiple, multiple lives. I just can't imagine not, now that I understand it."

It's important that people let their family know about their wish to donate, Carpenter said.

If someone at the end of life hasn't signed up with the registry, their family will be asked about what they think their loved one would want.

Islanders can visit makeitzero.ca or Facebook page Organ and Tissue Donation P.E.I. to learn more about becoming a donor and to sign up.

Checkups to continue

John is home in Summerside now, but still making regular visits to Toronto for checkups. The first year is the hardest, said Dawson, but doctors will want to continue checking on his new heart twice a year.

Developmentally, John's year in the hospital does not seem to have had a serious impact.

"I would say at age two he was just at par, if not a little bit ahead of where his siblings were," his mother said.

It's still not easy, Dawson said, but a year ago they had no idea whether they could ever get even this far.