Maryam Tanus with her doctors, Dr. Osami Honjo and Dr. Aamir Jeeva at the Hospital for Sick Children in Toronto.
At the age of 11, Mariam Tanous experienced many unusual things for a person her age. She has undergone multiple open-heart surgeries – two of which led to a heart transplant – and just last year became both one of the youngest patients in the world and the first child in Canada to receive a completely artificial heart.
Now, a full year after her surgery, Mariam’s family and her team of doctors at Sick Kids Hospital in Toronto are sharing their experiences with the life-saving technology.
“It was so hard,” said Mariam’s mother, Linda Antoine Adouar, of Mariam’s long battle with congenital heart disease. “I understand that some parents feel they can’t go on, but my message to them is: Don’t give up.”
So-called fully artificial hearts like Mariam’s are not substitutes for normal hearts. Rather, such devices are seen as a type of “bridge” therapy for patients who need a heart transplant but are not candidates for one, either due to a lack of donors or because they are simply not healthy enough to undergo a transplant .
In Mariam’s case, she needs a repeat transplant, which is considered very risky for someone her age, especially with an already weakened immune system due to the immunosuppressive drugs she was taking to support her existing transplanted heart.
With Mariam’s heart failing and no other options available, Dr. Osami Honjo and his surgical team decided to attempt the difficult operation of installing an artificial heart, hoping that the device could enable her body’s immune system to soothed before a second transplant procedure.
“Either we gave up and let it go or we had to do something,” Dr. Hogno said, adding that his team took on the challenge of the procedure knowing that her two previous procedures would mean they would have to contend with already fragile body.
Mariam is receiving physical therapy after receiving the full artificial heart. Courtesy of the family
“We expected this operation to be very difficult because we knew it would be really messy inside the chest.”
The operation to install a SynCardia complete artificial heart into Mariam’s body, where it would remain for two months before she could receive a full heart transplant, began on July 8, 2021, and lasted about fourteen hours.
During the operation, Mariam’s surgical team removed the lower half of her heart and replaced its valves and outer structure with a polyethylene replica – while maintaining normal levels of blood flow to the rest of her body and organs.
Despite the complexity of the operation, Dr. Honjo said the main problem encountered during the operation was the actual size of the device. Because it was only available in two sizes, both of which were too large for Mariam’s body, the surgical team was unable to close Mariam’s chest for five days after the operation until her swelling went down.
Dr Aamir Jeewa, Mariam’s cardiologist and head of cardiac function at Sick Kids, described the artificial heart pumps as “two grapefruits”.
“Most mechanical support for children with heart failure is in the form of devices approved for adult patients,” added Dr. Jeewa. “This often creates challenges when trying to fit these larger devices in smaller children.”
When Mariam finally woke up from the operation, two tubes ran from the device inside her body from two holes in her abdomen to part of a large external machine that regulated her heart rate and allowed the device to replace the functionality of her two cameras.
Mariam at a follow-up meeting earlier this year
Just over two months later, on September 19, Mariam underwent her fourth open-heart surgery and received her second heart transplant—the same one that beats inside her today.
“She loved life and needed to be alive,” Ms Adwar said.
“She goes to school in person after all this. He goes to the pool again and swims with his brother and father. He had to play basketball again, run around, ride a bike. Now she does everything, thank God.
Dr Honjo and Dr Jeewa said they expect technologies such as the full artificial heart to continue to improve and become smaller, allowing for easier use in children like Mariam.
Whether artificial hearts will one day completely replace the need for a transplant remains to be seen, but Dr. Honjo said — given the advances in biotechnology over the past two decades — that it is a real possibility.
“Twenty years ago we didn’t have this type of technology at all, so it’s been a very rapid and quite significant development in recent years,” he said.
“We’re not there yet, but it’s possible.”
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