Juliette is seven years old. Up until last year, she used to have 10 to 12 seizures every day, only she and her parents didn’t know it. It was a critical situation that affected every facet of her development from birth onward. Until she had laser neurosurgery in 2019 and everything changed. And gave her world back.
“Juliette has been laughing spontaneously since she was an infant. The kind of laugh that’s completely out of place. She’d wake me up every 20 minutes when she was a baby. I thought something was seriously wrong.”
That’s how Juliette’s mother, Judith,described the rare form of epilepsy her daughter was later diagnosed with. The one that was culprit behind what she eventually learned were “gelastic” seizures.
Since infancy, Juliette has had between 10 and 12 seizures a day. With each one, she would zone out and laugh uncontrollably. But her parents didn’t suspect epilepsy until six years later.
Early in her development, in addition to the bouts of laughter, there were numerous other issues that her doctors attributed first to a behavioural issue, then to emotional dysregulation. She was in a constant state of oppositional defiance, she would have episodes of rage, where she would scream and bite. At her daycare centre, she was ostracized by the other children. By the time she got to kindergarten, she could barely follow the classroom instructions. Not altogether unsurprisingly, none of the other students wanted to be her friend.
“Mom, I just get so mad all the time,” was the only way Juliette could describe what she was going through.
Judith and her partner began to think she might have bipolar or borderline personality disorder. They were exhausted. The whole family was at their wit’s end.
We were doing our best to stay strong, but it was utter chaos.
Judith’s sister was the one who thought that Juliette’s symptoms might be related to epilepsy. One of the women she worked with had a daughter with a similar profile.
It all matched up. The lack of control over her emotions. Bursting into laughter or tears out of the blue. Spacing out several times a day. That’s when Sainte-Justine came into their lives.
It was April 2019 when Dr. Bradley Osterman saw Juliette for the first time. He sent her for a battery of neurological tests at Sainte-Justine.
The verdict: a benign brain tumour known as a hypothalamic hamartoma about the size of a gumball nested in between her hypothalamus and her optical nerves. That’s what was causing her seizures and affecting the emotion centre in her brain. They feared her eyesight would be next. She needed to be operated on, and fast.
A hypothalamic hamartoma isn’t a tumour in the strict sense, nor is it a form of cancer. It’s basically a mass of normal tissue that’s in the wrong spot. It has to be treated, otherwise it can have a significant effect on overall brain function. One out of 200,000 children is diagnosed with this condition. Like Juliette, patients often experience severe personality changes, mood swings and concentration issues.
Juliette’s operation took place in December 2019, using the state-of-the-art neurosurgery laser acquired through the generosity of CHU Sainte-Justine Foundation donors. The procedure was an unmitigated success. She started to get better in no time, and the positive changes began rolling in.
Making friends. Following a morning routine. Filling up her own lunchbox. Telling her mom she loves her. Being able to say, “When the teacher gives me a sheet, I know what to do now.” These are only some of Juliette’s victories, big and small.
Being admitted to Sainte-Justine was a little like winning the lottery for us. Overnight, there’s somebody there to manage your child’s case and help you as a parent. Give you tools to manage your stress. Listen to you and answer your questions. Tell you there are solutions. And hear the doctor say, ‘I’ll take good care of your daughter in the OR, just as if she were my own.’
Sainte-Justine is one of the only pediatric facilities in Quebec with this type of advanced equipment. Realizing how fortunate he is to have access to this laser, Dr. Osterman mentioned that, before its acquisition, hypothalamic hamartoma wasn’t a diagnostic he or his colleagues relished giving to families.
“The procedure used to be a lot riskier. There was a danger of long-term damage to other parts of the brain. After surgery, our patients would often end up with a whole new set of endocrine system or behavioural problems. The laser lets us operate with greater precision and substantially reduces the chances of post-op complications.”
Sainte-Justine gave us our real Juliette.
Juliette’s seizures haven’t disappeared altogether. But there aren’t anywhere near as many as there used to be. They no longer put a wall up between Juliette and the people around her. And it doesn’t keep her from living her life.
From February 22 to 28, 2021, Juliette will proudly serve as the ambassador for the CHU Sainte-Justine Foundation’s 15th annual Winter Triathlon. Participants will take part in three challenges inspired by her story:
– Clock up 12,775 km as a group (roughly the number of seizures Juliette has had since birth)
– Head out 12 times during the week of the Winter Triathlon (representing the number of specialists Juliette has seen at Sainte-Justine)
– Do 210 minutes of individual exercise during the week (because Juliette loves to dance — since her operation she can easily spend 210 minutes a week swinging and swaying to the music!)
Juliette’s vision of what true victory is will undoubtedly be an inspiration to everyone during this week-long event.
