Olena Lupko does not believe it yet. A little over a year ago, she fled her country at war, Ukraine, to find refuge in Canada with her sick teenager. “Oleksii had 20, 30 or 50 epileptic seizures a day,” said the mother, accompanied by a translator, in Ukrainian. “He was having a seizure, he was sleeping. He was having a fit, he was sleeping. Day and night. Oleksii, 16, is now cured.
The young Ukrainian underwent brain surgery using a neurosurgical laser at the Sainte-Justine University Hospital Center (CHU) in Montreal in February. Since birth, Oleksii has suffered from a benign brain tumor — a hypothalamic hamartoma of about 5 cm — which causes recurrent epileptic seizures. “In Ukraine, we tried everything possible,” says her mother.
Oleksii underwent open brain surgery in his home country when he was six years old. “After opening, the surgeons found that they could not do anything and had to close,” says Olena Lupko, who was a nurse in kyiv. After that, the seizures increased more and more. Taking numerous anticonvulsant medications didn’t change that.
Upon their arrival in Quebec, the mother of a single-parent family appealed to the Maison internationale de la Rive-Sud, in Brossard, to find a doctor who could follow Oleksiï. The family was directed to the CHU Sainte-Justine. “They showed up just to get drug refills,” recalls neurologist Aris Hadjinicolaou. They didn’t necessarily know that we had other options for him. »
The CHU Sainte-Justine team offered Oleksiï cutting-edge technology: laser surgery. Neurosurgeon Alexander G. Weil performed the procedure, along with Dr.r Hadjinicolaou. Their mission? “Disconnect” the tumor connected “to the circuitry of the brain”, which triggers “abnormal discharges” and causes epileptic seizures, explains the Dr Weill. “It’s like putting the hamartoma offline “, he illustrates.
Simple, in appearance. But the intervention remains delicate. Oleksii’s tumor is lodged in the hypothalamus, the human body’s thermostat. By attempting to “disconnect” the tumor, doctors can also damage nearby areas responsible for hormonal control, memory and motor skills, among other things.
Everyone was remarkably invested in this story, ranging from the secretary, the nurses and the specialists consulted who took care of the patient
Fortunately, the operation went well. According to the Dr Weil, the success rate of this laser surgery is around 70% or 80% for this type of case. “This technique is much more effective and safer than open surgery,” he says. It is also less invasive. Operated patients do not have to go through intensive care. Their hospital stay is also shortened.
A new life
This intervention changed the lives of Oleksiï and his mother. In Ukraine, the teenager could not attend school, given the incessant seizures of epilepsy. He now goes an hour and a half a day in a class of students with autism spectrum disorder (ASD).
Oleksii does not have an ASD diagnosis, but his condition is unclear. It is awaiting evaluation. “The anticonvulsant drugs he takes, it slows down the brain a little bit and it can have a cognitive effect,” says Dr.r Hadjinicolaou. The teenager also has behavioral problems, which may be related to his tumor. This is without taking into account the language barrier which does not help his socialization in any way.
Despite everything, his school integration is going well. He learns words in French, which he teaches to his mother. “I like talking with the other children and dancing,” says Oleksiï, in Ukrainian. “I purposely mix up the names of the teachers to make the others laugh,” adds the boy, smiling, raising his eyes furtively glued to a numbered coloring game on his smartphone.
Oleksiï’s adventure at the CHU Sainte-Justine is not over. The boy suffers from type 2 diabetes, developed due to his tumor or the operation undergone in Ukraine. An endocrinologist follows him. A second laser operation is also planned for this summer in order to “complete the disconnection” of the hamartoma. Thanks to this second intervention, the specialists hope to be able to reduce his anticonvulsant medication. The boy will then be able to attend school more diligently, which will allow his mother, who takes care of him alone, to follow francization courses. She hopes to start them this fall.
Beyond treatment, the CHU Sainte-Justine team wants to make life easier and the integration of the family into the community, underlines Dr.r Hadjinicolaou. “Everyone has invested in this story in a remarkable way, from the secretary, the nurses and the specialists consulted who took care of the patient,” he says. Without forgetting Bohdana Marandyuk, without whom “nothing would have been possible”, he specifies.
Of Ukrainian origin, this coordinator at the CHU Sainte-Justine Research Center accompanies Oleksiï and his mother to all the medical appointments in order to translate the discussions. A first experience for her. “One day, at the hospital, we made an announcement to theintercom saying that we were looking for someone who spoke Ukrainian, says Bohdana Marandyuk. We said “show up at such and such a door” and I went! »
Olena Lupko says she is very grateful to the CHU Sainte-Justine and the Quebec health system. Her son was able to receive his treatments for free because he has a health insurance card. The family benefits from the Canada-Ukraine Emergency Travel Authorization, a federal initiative put in place following the Russian invasion. “I love this country, says Olena Lupko. I would like us to settle here for the rest of our lives. »