TORONTO — Multiple heart surgeries and near-death experiences earned 12-year-old Mariam Tannous the nickname Mariam Miracle, her mom says.
And for good reason: About a year ago, the now thriving pre-teen became the youngest person in Canada, and among the youngest in the world, to receive a device known as a total artificial heart.
Her doctors at Toronto’s Hospital for Sick Children on Monday outlined their last-ditch effort to save her life when an earlier transplant began to fail. It’s all the more remarkable because such devices are only made for adults—the machine barely fit in Mariam’s chest, and after the implant, her surgeon Dr. Osami Honjo says he left the cavity open for days because “it was too big to close immediately. .”
Mariam’s mother, Linda Antouan Adwar, recalls many tearful days praying for her daughter’s recovery and the joy she felt when she learned Mariam would be okay.
“It’s a miracle. She is a strong girl. He loves life. She must be alive,” says Antouan Adwar, describing a lively, active 7th grader who enjoys swimming, collecting LOL dolls and drawing.
Mariam was born with two forms of congenital heart disease – Ebstein’s anomaly caused a leaky valve and cardiomyopathy caused a malformed right ventricle.
He had open-heart surgery at age three and a heart transplant at age seven, but a steady decline at age 11 culminated in cardiac arrest in June 2021.
Antouan Adwar remembers the terrifying day Mariam suddenly collapsed at home. Her older brother administered CPR while they waited for an ambulance at SickKids. She was resuscitated and stabilized in intensive care, but doctors recognized that her heart was giving out.
She would need a second transplant but also time to regain strength, time for her immune response to subside and time to find a new organ.
Her cardiologist Dr Aamir Jeewa says this led the medical team to the total artificial heart – a device that can effectively replace an entire human heart for a limited time. This is unlike other devices, which are designed to attach to an existing heart to help it work. It has only been used in 58 patients in Canada so far.
The procedure involves removing the heart’s two main pumping chambers and replacing them with mechanical pumps that are surgically attached, explains Jeewa, head of SickKids’ heart function program.
Tubes run from the pumps, out of the chest, and into a large wheeled console that runs 24/7 outside the body.
Honjo recounts a 14-hour procedure in which he navigated scars from previous surgeries and had to place Mariam on a cardiopulmonary bypass machine for four and a half hours.
When it came time to remove her from the bypass circuit, Mariam was bleeding profusely and Honjo spent “hours and hours” trying to stop the bleeding.
Then it was time to hang up, and the reality of reverse-engineering a device intended for an adult hit home, he says. The cavity was covered with a temporary patch for five days until Mariam’s body adjusted to the device and her blood pressure stabilized.
“We really wanted to close because obviously it’s stuff sitting in a chest, so we can’t afford contamination. But in her case, it was too big to close immediately,” says Honjo.
After the operation, Mariam remained sedated with mechanical ventilation for 16 days. During this time, blood and fluid accumulated around the device, requiring another operation.
“It was really, really hard,” says Honjo. “But somehow, it finally stabilized. I can’t explain why.”
A heart for Mariam became available two months later, leading to another challenge: removing the device and connecting what amounted to her third heart implant. Now there was more scarring at the site, and the extra-large device had compressed a systemic vein, Honjo says.
But as a specialist in complex congenital heart surgery for infants, Honjo was used to difficult operations and says the actual procedure was not as difficult as the extensive medical care Mariam needed to survive so many interventions.
Like Mariam’s mom, Honjo relies on mystical terms to explain her survival: “It’s magic.”
“Surgery wise, I wasn’t really nervous. But obviously, the team as a whole was quite unsure whether they would make it or not,” he says.
Mariam has ongoing challenges and will have to take immunosuppressant drugs every day for the rest of her life, Honjo says, although pediatric transplant patients tend to do much better than adults.
However, transplants are not a cure — they can only prolong one’s life, Jeewa says, and it is very possible that Mariam’s heart will fail at some point in the future.
What’s important now is to make sure Mariam can live the best life she can, he says. Aside from taking regular medication and seeing a cardiologist, he should be able to do what most kids basically do.
“We want them to go to school, be active, play games, do all the normal things an 11-, 12-year-old should do,” Jeewa says of the young transplant recipients.
Today, Antouan Adwar says Mariam is a very typical child who is embracing her summer vacation at school and the family is grateful to the entire medical team that brought her back from the brink of death.
He says Mariam swims four times a week and loves playing soccer and basketball with big brother Jack. And she continued her passion for art that started at SickKids, where she drew pictures of her family — enclosed by a huge heart.
“We’re so proud of what’s going on. We are so proud of Mariam,” says Antouan Adwar.
“She’s done a lot and she’s strong. She showed everyone how strong she is.”
