A Transatlantic Epilepsy Journey

In 1985, after years of frustrating visits to doctors and clinics all over England, Margaret Cornes was sitting in a London hospital with an older, reputed doctor, and a junior resident. She was told her daughter Jessica, eight, was having complex partial seizures due to epilepsy, likely caused by encephalitis. Cornes felt relieved to finally have answers, but was devastated when the doctor told her there wasn’t any further treatment available for Jessica’s terrible seizures.“Is there anywhere else in the world we could take her?” asked Cornes. “Somewhere there are experts who know more?” The older doctor said no, unfortunately, there was not.

Cornes left the hospital, defeated that she had seemingly come to the end of the road. Then she realized someone was calling her name — it was the junior doctor from the office. “Mrs. Cornes!” the junior doctor called out, running down the hall after her. “It isn’t true — there is somewhere you can take Jessica. You can take her to Montreal, in Canada.”That was the first time the Cornes had heard of the Montreal Neurological Institute, and it changed their lives forever.

Coming to Canada

In 1986, Cornes brought Jessica to Montreal, where they were seen by renowned neurologist Dr. Fred Andermann, who was director of the epilepsy unit and seizure clinic at The Neuro for 35 years.“Dr. Andermann knew everyone’s names, their jobs, where they were from—it just wasn’t like that at all in England. The culture in Canada was totally different,” says Cornes.Over the course of a month, Jessica was given tests in preparation for surgery. Dr. Andermann was notably interested in all of Cornes’s observations about Jessica, including unusual things that seemed to trigger her seizures, like walking down a narrow street with tall buildings on either side. Dr. Andermann wrote everything down seriously. These same observations had been dismissed by other doctors, and Cornes asked if what she was sharing was helpful. “Mrs. Cornes,” said Dr. Andermann gently. “You know your daughter best — mothers always know.”Cornes remembers “everything” about their time in Montreal, including that they shared a hospital room with an 18-month-old girl called Marie-Ève who was also having surgery for epilepsy. Although Cornes spoke little French and Marie-Ève’s mother little English, they shared a powerful experience, including the difficult pre-surgical testing which induced seizures, and the frightening first days after surgery. Cornes remembers a mother in distress, but one who was grateful to have a world-renowned institution in her own city. Cornes recalls the other mother saying, “Bless this hospital.”

Life changing surgery

Jessica’s surgery was a success, and they returned three more times to Montreal, once for a subsequent surgery and twice more for follow up tests.On one of these visits, Cornes and her daughter were waiting for their appointment when they saw a little girl running down the hall. Cornes knew at once it was Marie-Ève. The mothers greeted each other like family. “The mom was a different person,” says Cornes. “A normal young woman with a young child running down the hall. And can you believe we saw her? Of all the days we were there? It was like a miracle.”And for Cornes, Jessica’s surgical outcome was a miracle. She went from having multiple seizures a day to having one every few months, and even these diminished over time. “Without The Neuro, we would have lost Jessica — her seizures were so terrible and took such a toll. Jess was forever changed, and has been able to live an independent life.” Today, Jessica is 47 years old.“It’s been almost 40 years, and every single day I still think about what The Neuro did for our family,” says Cornes. “When you have such high regard for something as I do for The Neuro, it stays in your heart forever.”

 Source: mcgill.ca, Sarah Stack