Cassandra Szklarski, Canadian Press
Posted on Monday, July 18, 2022 at 5:29 AM m. WBS
TORONTO – Multiple heart surgeries and near-death experiences have earned 12-year-old Mariam Tannous the nickname Mariam Miracle, her mother says.
And for good reason: About a year ago, the now-thriving preteen became the youngest person in Canada — and among the smallest in the world — to receive a device known as a total artificial heart.
His doctors at Toronto’s Hospital for Sick Children detailed Monday their latest life-saving measure when a previous transplant began to fail. It’s all the more remarkable because these devices are only made for adults: The machine barely fit in Mariam’s chest, and after implantation, her surgeon, Dr. Osami Honjo, says he left the cavity open for days because “it was too big.” great to close it immediately”. .”
Mariam’s mother, Linda Antouan Adwar, recalls many tearful days praying for her daughter’s recovery and the elation she felt when she learned Mariam would be okay.
“She is a miracle. She is a strong girl. She loves life. She needs to be alive,” says Antouan Adwar, describing a lively and active seventh grader who loves 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 malformation of the right ventricle.
He underwent 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 recalls the terrifying day Mariam suddenly collapsed at home. Her older brother administered CPR while they waited for an ambulance for SickKids. She was resuscitated and stabilized in intensive care, but doctors recognized that her heart was failing.
He would need a second transplant, but also time to regain his strength, time for his immune response to subside, and time to find a new organ.
His cardiologist, Dr. Aamir Jeewa, says he led the medical team to the total artificial heart, a device that can essentially replace an entire human heart for a limited period of time. This is unlike other devices, which are designed to connect to an existing heart to help it function. 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 connected, explains Jeewa, director of SickKids’ cardiac function program.
The tubes come out of 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 operations 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 bled significantly and Honjo spent “hours and hours” to stop the bleeding.
Then it was time to shut down and the reality of reverse engineering a device intended for an adult came to the fore, he says. The cavity was covered with a temporary patch for five days until Mariam’s body was able to adapt to the device and her blood pressure stabilized.
“We really wanted to shut down because it’s obviously hardware in a chest, so we can’t afford to have the infection. But in his case, that was too big to shut down right away,” says Honjo.
After surgery, Mariam remained sedated with mechanical ventilation for 16 days. During that time, blood and fluid collected around the device, requiring another operation.
“It was very, very difficult,” says Honjo. “But somehow, he finally stabilized. I can’t explain why.
A heart for Mariam became available two months later, which led to another challenge: removing the device and connecting what amounted to her third heart implant. There was now more scarring at the site, and the oversized device had compressed a systemic vein, Honjo says.
But as a specialist in complex congenital heart surgery for babies, Honjo was used to complicated operations and says the actual procedure wasn’t nearly as challenging as the more extensive medical care Mariam needed to survive so many surgeries.
Like Mariam’s mother, Honjo relies on mystical terms to explain his survival: “It’s magical.”
Surgically, I wasn’t really nervous. But obviously the team as a whole wasn’t sure if she was going to make it or not,” he says.
Mariam has ongoing challenges and will have to take immunosuppressive drugs every day for the rest of her life, Honjo says, though pediatric transplant patients often do much better than adults.
Still, transplants are not a cure: They can only extend life, says Jeewa, and it is very likely that Mariam’s heart will fail at some point in the future.
The important thing now is to make sure Mariam can live the best life she can, she says. In addition to taking medication regularly and seeing a cardiologist, she should be able to do what most kids pretty much do.
“We want them to go to school, be active, play, do all the normal things an 11- or 12-year-old should do,” Jeewa says of young transplant recipients.
Today, Antouan Adwar says that Mariam is very much a typical girl enjoying her summer school break, and the family is grateful to the entire medical team that rescued her from the brink of death.
She says that Mariam swims four times a week and loves playing soccer and basketball with her older brother Jack. And she carries on a passion for art that she started at SickKids, where she would draw pictures of her family, surrounded by a huge heart.
“We are very proud of what is happening. We are very proud of Mariam,” says Antouan Adwar.
“He did a lot and he is strong. He showed everyone how strong he is.”