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A child has just undergone his 17th operation in the brain because his cranial box is too small and it causes him horrible headaches.
Alexy Vieneau-Lecours, who turns 4 on December 10, was born with a big bump on his head after being pulled out of his mother's womb with a suction cup. Two weeks after his birth on December 27, 2014, he had to undergo a first surgery to the head to enlarge his skull.
During the night, the newborn screamed in pain due to significant headaches. After a series of tests, the diagnosis fell. The baby had a cranial box too small, which would be very rare. It was a very delicate procedure and the doctors did not know if it was going to go through, according to his parents, Sébastien Lecours, 38, and Mélissa Vieneau, 26.
"I had just given birth and I did not know if he would come back in my arms. I did not even know if he was going out of the living room. "I cried the six hours of the operation," remembers Mélissa Vieneau.
surgeries
Since then, the boy can wake up at any time of the night with a huge headache. Her screams and screams are so intense that each time parents fear that neighbors will call the Youth Protection Branch.
He underwent an average head surgery every three months. On November 23, the boy suffered a bone distraction that allows surgeons to create bone physiologically by inserting a device. This was his 17th surgery.
Every time her parents see their son leave the room on his little stretcher to get to the operating room, they find it very difficult.
"I remember, during the first operations, I was positive. Now, I stopped telling my wife that this is the last operation because the reality is that it never ends. I would take my place anytime, "said the father of Alexy Vieneau-Lecours¬¬¬ Sebastien Lecours.
The child must avoid catching a virus since nobody knows when the next operation will take place. When he has a pain crisis, he must be operated urgently, so he must not be sick to not delay the surgery, on pain of dying.
Hope
Since December 27, 2014, the family has been increasing visits to the hospital. However, they never lose hope that their son will one day be able to live as a child.
"Alexy is looking forward to having friends and playing with them. Our boy loves everyone, for him, he is no different, "said the mother.
His parents put their lives on pause
Job losses, anxiety disorders, anxiety attacks … the life of the Vieneau-Lecours couple stopped to meet the needs of their only son.
Since December 2014, Sébastien Lecours has never managed to keep a job because he often has to take time off to accompany his son to the hospital.
"I live on the hooks of society and I do not like it. I worked all my life. But because of the many appointments, I often missed work. I chose my family, but it's hard, "said Lecours, who works in customer service.
Nothing
Born in Drummondville, the man dreams of returning to his city with his wife and boy.
But just thinking that they are an hour away from the Montreal Children's Hospital is very stressful for the couple since they may have to go to the hospital at any time.
In addition to being away from their parents, parents do not have caretakers, no longer have close friends, both have generalized anxiety, and no longer sleep together.
As Alexy's pain attacks always occur during the night, parents always sleep with him.
"I'm afraid my son does not wake up. I do not want to sleep far from him, because I'm afraid I will not hear him crying if something happens, "said Ms. Vieneau.
They dream of returning to the job market and their boy can go to the neighborhood school. But for now, staying on the lookout and watching their son occupies 100% of their time. "We live in the present and we will let the future do its work," concluded the father.
At the moment, no specialist knows if Alexy will be able to live a life without brain surgery and what will be the long-term sequels.
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