The mother says that 12-year-old Mariam Tannous has earned the nickname Mariam Miracle through multiple heart surgeries and near-death experiences.
And for good reason: About a year ago, the now prosperous preteen was the youngest in Canada and one of the smallest in the world, receiving a device called a complete artificial heart.
On Monday, her doctor at the Hospital for Sick Children in Toronto detailed their last resort to save her life when a previous transplant began to fail. It’s even more noteworthy because such devices are for adults only. The machine barely fits in Mariam’s chest, and after the transplant, surgeon Dr. Osami Honjo said, “I left the cavity open for a few days because it was too big to close immediately.” .. “
Mariam’s mother, Linda Antoin Adwar, remembers the days shed tears as she prayed for her daughter’s recovery, and the uplifting feeling she felt when she learned of Mariam would be okay.
“She’s a miracle. She’s a strong girl. She loves life. She needs to be alive,” says Antouan Adwar, who loves swimming, collecting LOL dolls, and painting. Learn about the vibrant and active 7th grade students.
Mariam was born with two forms of congenital heart disease. Ebstein’s anomaly caused valve leakage, and cardiomyopathy caused the malformed right ventricle.
She underwent cardiotomy at age 3 and had a heart transplant at age 7, but steadily declined at age 11 and reached cardiac arrest in June 2021.
Antouan Adwar remembers the horrifying day when Mariam suddenly collapsed at home. Her brother performed CPR while waiting for an ambulance to Sick Kids. She was resuscitated and stable in the intensive care unit, but doctors realized that her heart was released.
She needs a second transplant, but she also needs time to regain strength, time for the immune response to subside, and time to find new organs.
Her cardiologist, Dr. Amir Jeewa, says she has led the medical team to a complete artificial heart. This is a device that can essentially replace the entire human heart for a limited period of time. This is unlike any other device that is designed to connect to the existing heart and assist in its function. So far, it has been used in only 58 patients in Canada.
In this procedure, the two main pump chambers of the heart are removed and replaced with surgically mounted mechanical pumps, explains Jeewa, head of the Cardiac Function Program at Sick Kids.
The tube exits the pump from the chest and flows out of the body into a large wheeled console that operates 24 hours a day, 7 days a week.
Honjo talks about a 14-hour procedure that left a scar on previous surgery and had to place Mariam on a cardiopulmonary bypass device for four and a half hours.
When it was time to remove her from the bypass circuit, Mariam bleeded a lot and Honjo spent “hours” to stop the bleeding.
Then came the time to close, he says, highlighting the reality of reverse engineering devices for adults. He covered the cavity with a temporary patch for five days until Mariam’s body adapted to the device and his blood pressure stabilized.
“Obviously it’s the hardware in the chest and we can’t afford to get infected, so we really wanted to close it. But in her case, it was too big to close immediately,” Honjo said. Says.
After surgery, Mariam remained on mechanical ventilation for 16 days. During that time, her blood and fluids accumulated around the device, requiring another operation.
“It was really, really hard,” says Honjo. “But for some reason she finally stabilized. I can’t explain why.”
Mariam’s heart became available two months later, leading to another challenge. It is to remove the device and connect the equivalent of a third cardiac implant. Honjo says that there are now more scars in the area, and oversized devices are compressing veins throughout the body.
However, as an expert in complex congenital heart surgery for babies, Honjo is accustomed to tricky surgery, and the actual procedure is as difficult as the broader medical care that Mariam needs to survive many interventions. Say it wasn’t.
Like Mariam’s mom, Honjo relies on mysterious words to describe her survival: “It’s magic.”
“Surgery, I wasn’t too nervous, but obviously the team as a whole was pretty uncertain if she would achieve that,” he says.
Honjo says that Mariam has ongoing challenges and will have to take immunosuppressive drugs daily for the rest of her life, but pediatric transplants tend to be much better than adults.
Still, transplantation is not a cure. Transplants only extend one’s lifespan, and Mariam’s heart is likely to fail at some point in the future, says Ziwa.
Now it’s important for Mariam to have the best possible life, he says. Besides taking her medicine regularly and seeing a cardiologist, she should be able to do virtually anything that most children do.
“We want them to go to school, work, play games, and do all the usual things that 11 and 12 years old should do,” says Jeewa, a young transplant recipient.
Today, Antouan Adwar says Mariam is a typical child to embrace summer vacation, and the family is grateful to the entire medical team for bringing her back from the brink of death.
She says Mariam swims four times a week and loves playing soccer and basketball with her brother Jack. And she continues her passion for her art, which began with Sick Kids, where she painted a picture 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.
“She did a lot, and she’s strong. She showed her strength to everyone.”
By Cassandra Szklarski
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