It’s been two weeks since 10-month-old Lucas Tanswell of Gananoque received a new heart at Toronto’s SickKids Hospital, and his doctor says he’s thriving.
“It is actually remarkable, given the number of months he was in the hospital attached to machines, that in less than a week he looks like a normal child,” said Dr. Anne Dipchand, cardiologist and head of the Heart Transplant Program at SickKids.
“We know how well these kids can do if they get a transplant, the problem is waiting for a transplant they have about a 25 per cent, sometimes 40 per cent chance of dying because there just aren’t enough organ donors,” added Dr. Dipchand.
Lucas’s parents knew the risks and the possibilities.
“We knew what was happening, we knew he had been diagnosed with dilated cardiomyopathy, we knew that this was not curable,” explained his mother, Anne-Marie MacKenzie.
Dilated cardiomyopathy is a condition in which the heart becomes enlarged and cannot pump blood effectively.
Lucas was born healthy, said his mother, but within two months, things changed.
He was diagnosed with the condition and the family was rushed to SickKids.
In October 2018, Lucas’s health began to decline rapidly and he was fitted with a Berlin heart, an air-driven pump which takes over the work of one or both sides of a child’s own heart.
It was a bridge until he would get a heart transplant.
Anne-Marie remembers having tough conversations with the medical team about donating her baby boy’s organs.
“We were prepared to do that if it came to that point, for sure, absolutely — and that was a no-brainer for us,” she said. “But we had to have those discussions. If it came to that point, we didn’t want to be making that decision at the last minute.”
Then, one cold, snowy January day, came the call.
“I was prepared to be like, ‘I’ve been waiting for your call, I didn’t expect it to come so soon,'” joked dad Milton Tanswell, “and instead I literally fell to my knees and shook and trembled.”
He went to share the news with his wife, who took one look at him, overcome with emotion, and feared the worst.
“I thought we lost him,” said Anne-Marie with tears rolling down her cheeks. “Because we didn’t think he was going to get a heart.”
But the weather was not working in the family’s favour.
“She’s like, ‘we have the heart, but I don’t know if we could get it into Toronto,'” recalls Milton about a conversation with Dr. Dipchand.
He remembers asking her if the blizzard conditions in the city could halt the arrival of the new heart.
“Without any hesitation, she was like, ‘absolutely,’ and that’s almost as devastating as the first time he went into the heart failure, the second time he went into heart failure, because you’re so close,” said Tanswell.
The transplant went ahead as planned.
After the three-hour surgery, Lucas recovered, and he is doing well.
“You stand taller, you breathe easier,” said his mom after a visit with Lucas, Milton and big sister Adelaide to the transplant clinic.
For Valentine’s Day, three-year-old Adelaide made cards for the people staying at Ronald McDonald House, where the Tanswells have been living while Lucas has been a patient at SickKids.
The Tanswells don’t need flowers and chocolate, though. The best gift is the one Lucas received earlier this month.
“You can actually see it. Externally. You can look at his chest and see his heart beat,” said an animated Milton.
It may not be romantic, but the family does have an important message to send out on this holiday about organ donation.
“Nobody wants to talk about it because it’s terrible to talk about, and no parent wants to even think about it, and it’s very easy to turn a blind eye to or a deaf ear to until it happens to you,” noted Milton.
The family is hopeful their son’s story reminds others to discuss their wishes early.
“It would make a lot more sense to me if you could register them at a time of peace and a presence of mind, not when you’re processing the fact that you could lose your child,” he added.
“I feel like we have this real special opportunity to talk about a beautiful story and a real success case .. and this can really turn an eye onto the desperate need for change.”