The question has taraled me since I had agreed with an interview with Kayden’s mom, 9, as part of the series on ungrateful roles. The boy has been running in just a few months, he is fed on the puree, he will never be able to speak and he will probably not be free from his diapers in his whole life.
His mother has this answer that surprised me: “As my daughter, born two years later, started walking and going alone to the toilet at a normal age, this is where I realized that I had exceeded my parent role with my little coconut,” says Martine Chartrand, 49 years old.
In our interview, she often refers to “her little coconut”. When she mentioned for the first time the “coconut syndrome”, I thought it was the familiar name of the genetic affection of her boy. But can a curse that strikes a newborn in 100,000 (Quebec counted less than 78,000 births in 2024) really have a familiar designation? Even in the hospital where the child was born, the medical profession had never heard of it.
Kayden is affected by Joubert’s syndrome, a genetic disease that impacts the cerebellum and the central trunk. The rare children who are assigned to it are not all as disabled as the son of Martine Chartrand.
The manifestations of the disease are of variable intensity, but there is always talk of respiratory problems, development delay, intellectual disabilities. Bonus: Kayden was born with six fingers and six toes on hands and feet.
From managerial caregiver …
Before the arrival of her boy, Martine Chartrand was a manager in a mining company, she was responsible for a 1000 room accommodation complex in Nunavik to welcome employees, the team she led had 60 people.
Before meeting the father of her children, she owned her house and was in the saddle, financially. Now she has to ask him for money to buy laundry.
It was in northern Quebec that she got to know her spouse. And they decided to start a family, a little late. Martine Chartrand had Kayden at 40, and her daughter, Mackenzie, at 42.
Her pregnancy went without worry until the 20th week, when we saw during an ultrasound that the fetus showed a big brain. Nothing yet to panic, it was later, following an MRI performed while the woman was 33 weeks pregnant, that we noticed the first clue of the Joubert syndrome in children, a molar -shaped cerebellum.
It was necessary to carry out an amniocentesis and send the liquid sample to a laboratory in the United States to confirm the diagnosis. When the results arrived, the child had been born for a week.
Martine Chartrand gave birth at the Pierre-Le Gardeur Mascouche Hospital surrounded by an imposing team of professionals. One case in 100,000 is an event for the medical profession.
The newborn was transferred by ambulance to Sainte-Justine, Montreal, two days later. He stayed there 33 days during which the parents had to go back and forth between Montreal and Sainte-Anne-des-Plaines, where they live.
The infant entered him connected to a monitor that watched his breathing and the amount of oxygen in his blood. The machine emitted an alarm to each anomaly.
“She sounded all the time, day and night,” recalls her mother.
It sometimes happened that the little one stopped breathing to the point of becoming blue. His parents then had to make manipulations so that he remembers activating his diaphragm, like a broken toy that would be brewed to revive him.
The 49-year-old woman had to let go of her job, she lived a year and a half of employment insurance and parental insurance, and after, nothing. Parents are entitled to supplement for disabled children from Quebec, and not just any, the top: supplement for disabled children requiring exceptional care.
There are two levels for this aid, the Kayden family has access to the highest amount, around $ 1,000 per month. “It means that my child is among the most disabled in the province, the day you realize it is a shock.”
The difference between an infant who will accuse delays and a healthy baby remains rather subtle, at first, apart from the fact that the first went once to a few breaths to die. I mean, all parents are mobilized by a perfectly helpless and dependent newborn.
The gap appears over time, in the absence of development, progress in children. To the role of parenting are added those of nurse and medical secretary. “I manage meetings with the physiotherapist, the occupational therapist, the inhalotherapist and the speech therapist.”
Kayden entered school at 5, like all children, but in a specialized establishment, where he made friends. He does not know how to speak, but he communicates in other ways, his mental delay would be light compared to his physical disabilities.
… At the helping pair
It allowed her mother to go back to work gradually in a company, she now works 35 hours per week at the star of Pacho, an organization that helps parents of disabled children. In addition to making the accounts, she supports parents when they receive the diagnosis, she guides them through the financial assistance resources and programs to which they have access.
Also, she sits on the board of directors of the parents’ house of disabled children in Laurentides.
I am uncomfortable asking this person capable of so much selflessness in which his role is “ungrateful”.
She could have mentioned the abandonment of her career and her loss of financial autonomy, mention the countless round trip to the hospital, the years in which she had to watch 24 hours a day on her child …
She finds her ungrateful role, because each year, she must fight to obtain school transportation which has a look at her guy who frequents a specialized school in Laval, fill the same paperwork to receive the financial support to which she is entitled, compose with the CLSC gangrenous by the bureaucracy.
Since day one.
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