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Local student spreads AVM awareness

By Cecilia Nasmith


Everyone's first day of high school is memorable but, for Olympia Beaulieu, it was life-changing.

The 14-year-old Cobourg Collegiate Institute student relived the day in a recent interview, recalling the excitement of the special challenge she had taken on in enrolling in the pre-International Baccalaureate program. She had studied one of her favourite subjects that day – science – and then joined her friends at a park afterwards.

As the friends traded first-day-of-school stories, Olympia began feeling a bit headachy. Then she threw up and passed out.

Her friends called Olympia's mother Veronika, who rushed to collect her daughter and get her to Northumberland Hills Hospital.

Olympia does have some memories of the wonderful treatment she received at NHH, although the tests they ran on her clearly showed something was not okay. They discovered a bleed in the brain and put mother and daughter on a helicopter to the Hospital for Sick Children as soon as possible.

After that, Olympia's memory gets fuzzy in some respects, and her mother took up the narrative.

Veronika recalls arriving at Sick Kids, and her husband Charles leaving work in Oshawa to join them there.

“She was taken straight to the ICU (intensive-care unit) and they had to do another CT scan right away,” she recalled, all of which led up to the AVM diagnosis – arterial venous malformation. It had likely been present since birth, or possibly in utero.

“There's a small percentage of the population that have it and a very, very small percentage of that population who even know they have it,” she said.

“Some people go through their whole lives and never know. How you usually find out is after it has ruptured – which is what happened.”

Doctors characterized Olympia's AVM as a large bleed in the back of her head in the occipital lobe that was affecting her eyesight. They hoped that the bleeding had stopped and the fluid that had been building up in her brain would not increase.

Olympia does recall being put under sedation for an angiogram, in which doctors inserted a catheter into her veins and into the brain to help them map out a picture of the AVM and where its blood supply was coming from. Then they did an embolization to stop the bleeding, after which Olympia spent a week in the ICU. This was followed by a week in the neurosurgery unit, where she began physiotherapy to start walking again.

“She has lost vision in both eyes, because of this aneurysm and the damage it caused to the brain, and also face blindness,” Veronika said.

This is the result of damage to a very, very small spot in the brain that allows recognition of faces.

“The brain is so fascinating, and something like this brings it home,” she stated.

Typically, facial recognition is performed by the brain entirely without conscious thought. We see the eyes, nose and mouth, and put a name to that person.

In Olympia's case, the brain doesn't supply that information. But her mother has found her compensating by using other cues like how someone stands or moves.

“Otherwise, when she meets new people, she wouldn't recognize them the second time,” she said.

As Olympia learns coping mechanisms like these, her family is holding out hope for the surgery being planned – if possible, after her body has reabsorbed the blood and the extra fluid that had built up. Then the surgeon will go into her brain and remove the AVM.

Some AVMs cannot be removed because they are too deep in the brain or too close to sections of the brain that control vital functions. In Olympia's case, she said, the surgeon is confident hers can be removed.

“There is always the risk,” Veronika allowed. But the surgeon has expressed confidence in the procedure, to be followed by five years of follow-up to be sure the AVM does not return – the chances of which are almost nonexistent.

“There will always be potential side effects from surgery, but hopefully that doesn't happen.”

For now, the surgeon has asked that Olympia rest quietly for now instead of returning to school. But her mother is very thankful for how things fell into place - “the fact that her friends called and told me something was wrong. They knew things weren't right.”

The wonderful care Olympia received at NHH and at Sick Kids is something else to be grateful for, she added.

Olympia admitted she feels a little nervous, “but I definitely am happy the surgery is going to happen sooner rather than later so I can recover quickly. There's things I want to do instead of being stuck at home!”

Olympia and her mother are happy to tell her story, not only because October was AVM Awareness Month but because they're in a unique position to spread the word that this can happen to anyone – though, as Veronika pointed out, you don't typically see it in a 14-year-old.

Olympia's story has a special twist, because she has always wanted to be a surgeon when she grew up. This was so obvious in the questions she asked her doctors, the proud mother said.

“Obviously, she was very serious about all this medical stuff,” she said.

“Things happen for a reason. You may not be 100% sure what those reasons are, but I know there will be some good that will come out of this.”