Four years after having been the smallest heart patient in Quebec, Liam is a boy “unstoppable” who shows nothing of his first months of life, where he was connected to a mechanical heart to survive until his miracle transplant. .
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“He loves to roll in the snow. In summer, we can’t get him out of the pool […] He is not burnable, he runs all the time, he wants to explore everything, ”laughs Jessica Sarrazin.
In 2016, The newspaper had covered the months of anguish for the young family of L’Épiphanie, in Lanaudière, as they waited for a heart to save baby Liam.
Suffering from irreversible dilated cardiomyopathy, a genetic condition that prevented his heart from pumping well, this transplant was his only hope.
On her 30th birthday, September 30, the mom received the unexpected call, and her then 6-month-old son received a new heart.
Heart of Berlin
But what saved Liam Joly and allowed him to wait four months to get a transplant was the heart of Berlin that the doctors at the Sainte-Justine University Hospital Center (CHU) took the risk of installing for him. The boy had been hospitalized two weeks after his birth.
Her skin had become mottled, according to her mom, who saw her blue veins run all over her tiny body.
To survive, he had to be intubated and slept almost 23 hours a day for three months.
Barely brushing 5 kg (11 lbs), he was dangerously small for the operation to install a Berlin heart, a device that circulates blood in place of the real organ.
Never seen
It was unheard of in Sainte-Justine, and a first in Quebec.
But the risk has paid off. For the first time since arriving at the hospital, his mother was able to hug her son.
“He started to make sounds, to play. I could finally take care of it ”, describes Mme Sarrazin.
Constantly, doctors also came to visit the toddler with their students to observe the tiny patient connected to the enormous machine, as big as “two metal filing cabinets with three drawers”.
Four years later and in great shape, Liam Joly and his family are preparing to experience a second Christmas in confinement.
Indeed, after his transplant in the fall of 2016, the family had to isolate themselves for six months to avoid any risk of their son catching an illness.
He is currently taking drugs to weaken his immune system to prevent his body from trying to reject his new heart.
The pandemic has therefore been very stressful for the family, who must be very careful with Liam. “But we live it well, since it is our second confinement”, philosopher Mme Sarrazin.
► Irreversible dilated cardiomyopathy
- Weakened muscle that prevents the heart from pumping blood
- At 3 months and 5 kg, the smallest Quebec patient with a Berlin heart
A first in Quebec
Courtesy photo
Liam had to be plugged into a heart in Berlin to survive until his heart transplant. He was the smallest heart patient at CHU Sainte-Justine.
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Weighing just 5 kg (11 lbs), Liam Joly was the smallest patient to receive mechanical heart assistance in Quebec, according to his doctor, Marie-Josée Raboisson, of CHU Sainte-Justine.
“It was really the last chance,” says the cardiologist, about the heart of Berlin installed on Liam at the age of 3 months.
Although the risks were immense on such a small child, it was his “only way of survival” until a heart transplant, which occurred four months later.
Rare operation
The installation of a Berlin heart in a child is already rare in itself. In Sainte-Justine, the operation has only been carried out fifteen times since 1984.
The mechanical heart is a large device made up of a cannula, a tube that draws blood to transport it to a chamber.
This serves as a pump, thus replacing the action of the heart. Then a second cannula is attached to the aorta, to return the blood to the body. Everything is connected to a console.
Its installation involves two risks: cracking and bleeding or the formation of blood clots by the device which can lead to a cerebrovascular accident (stroke).
The Dre Raboisson points out that the smaller the tubes, as for toddlers, the greater the risk of clots.
In addition, Liam already had bleeding from his head that worried the doctors.
Extreme risk
The risk was therefore “extremely significant”.
But the boy’s too unstable state threatened his survival. Intubated and asleep for three months, his development, crucial for a newborn, was also impossible.
Despite a stroke, which temporarily paralyzed her right side without serious damage, the operation was a success. “Thanks to that, he was able to wait [une greffe] in good conditions, ”breathes the doctor.
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