At 42-years-old and 22 weeks pregnant, Amy Swenson-Tiano’s life was about to change dramatically – a few months ahead of schedule.
Since she was a teenager, Amy had questioned her diagnosis of epilepsy. While sometimes overwhelmed by feelings of anxiety over episodes, she assumed she was a victim of panic attacks.
That was until April 1, 2019, when Amy woke up in the middle of the night convulsing, jolting her wife Sandra awake through a 15-minute seizure. When medical help arrived, they found her confused and disoriented. “I didn’t know who anyone was,” remembers Amy. “Essentially I just opened my eyes, and there were two paramedics standing over me.”
Living in the Parkdale area of Toronto, Amy was brought to St. Joseph’s Hospital for treatment. A definitive epilepsy diagnosis meant serious adjustments had to be made immediately. Despite being the driver of a family that included her five-year-old daughter, Amy’s licence was revoked, and an element of risk was suddenly attached to everyday activities. “Everything was now different,” says Amy. “I was terrified of leaving the house and having another seizure in public.”
Most importantly, care during Amy’s pregnancy had to be re-evaluated. This led to the heartbreaking realization that the midwives she trusted as healthcare providers and friends could not be her primary caregivers.
Eventually Amy was referred to Dr. Esther Bui, a neurologist at the Krembil Brain Institute, Toronto Western Hospital, and one of the country’s leading authorities on treating women with epilepsy. “There was something about walking into the Western – it didn’t feel scary any more. The signs are welcoming, the clinic’s receptionist was so lovely and kind and I just felt so comfortable.”
Within five minutes of meeting Dr. Bui, Amy was put at ease, feeling heard, respected and empowered. “She had a fellow with her that day, so not only was she walking through the questions for me, but also teaching him. “I just had total faith in her,” explains Amy. “Not only did she reassure me that my baby would be fine, but she made sure to explain to me why.”
With several seizures following the “big one,” Dr. Bui also walked Amy through the pros and cons of several medications on the market, and what was considered safe and effective. Dr. Bui also discussed in detail a study that Amy had read and brought forward.
“It hasn’t been my normal experience to have a physician talk to me as if I’m capable of understanding the science,” says Amy. “But Dr. Bui understood that I needed to feel comfortable, and that I was being taken seriously as the primary partner in my own healthcare, and she took me through it all, one step at a time. It was vital in helping me feel not so overwhelmed.”
Up until the delivery date, Dr. Bui also provided both Amy and Sandra ways to stay safe around the house, explaining safety protocols before and after the baby was born and ensuring the safest and healthiest environment for everyone. “To have my wife included in this was pretty special for both of us.”
On July 21, 2019, Connor James was born, and welcomed into the arms of Amy, Sandra, and sister Carly. Dr. Bui’s assistance continued.
From adjusting drug levels in the wake of declining seizures, to childcare recommendations and everyday lifestyle choices, Dr. Bui has been available for the family. “With all the neurologists I’ve seen, she’s given me extra information that I was never told in my whole life,” says Amy. “From the first time I met her, it was a great experience. I would be happy shouting from the rooftops that it was my turning point.”
