“I wasn’t sure this was ever going to happen. Not expected, not planned, but when the time was right, things fell into place. I can thank the epilepsy team at Toronto Western for that.”
The journey to motherhood followed a long and winding road that at times felt like a “roller-coaster” ride for Brooke and her family, which includes her partner Shawn Gray. While she always hoped to one day be a mom, a surprise diagnosis of epilepsy in her 30s, followed by brain surgery at the Krembil Neuroscience Centre, led Brooke to question whether it was even possible.
Strange symptoms
Epilepsy is something Brooke admits she knew very little about until five years ago when she started to develop strange symptoms, including dizziness, light-headedness and an unusual sense of smell. She didn’t know it at the time, but Brooke was experiencing complex partial seizures.
After a series of unexpected seizures disrupted her life Brooke was referred to Dr. Peter Carlen, a neurologist at Toronto Western Hospital. Over the course of a year, Dr. Carlen ran a battery of tests, including magnetic resonance imaging (MRI), sleep deprivation and followed by an electroencephalogram (EEG), and was able to provide a diagnosis of epilepsy.
Fearing the stigma associated with epilepsy, Brooke kept her diagnosis a secret from all but a handful of people at her office. She works in administration for a Toronto property assessment firm.
Turning Point
One day after her diagnosis, Brooke was forced to confront the reality of her condition. After boiling a pot of hot water and preparing a cup of green tea in the office kitchen, she was walking back to her desk when she says the strange symptoms, which she also describes as an “aura,” overtook her body. To the outside world, she was having a seizure, but she didn’t know it.
“When I sort of regained consciousness, I remember my tea was all over the ground and I spilled it on my clothing. I tried to pass it off as nothing to a colleague who was walking by. But when I got back to my desk I realized I burnt my leg and it left a scar. I call that scar my turning point. That’s when I said to myself: ‘This is it. You really need to take action.”
Brooke returned to TWH to see Dr. Carlen determined to get answers about her condition. Initially this included trying different drugs, but it also included an introduction to other members of the epilepsy team, specifically epilepsy nurse practitioner Darcia Paul and nurse/patient care coordinator Chari Anor.
Brain surgery
As the days went by, Brooke began to worry she may not be able to have a child. She developed anxiety about her seizures, which were occurring between two and five times a month, and then in October, 2014, spent a week in the Epilepsy Monitoring Unit (EMU), where video and EEG recordings were utilized to pinpoint the location of her seizure activity.
Her trip to the EMU was followed by an introduction to epilepsy neurosurgeon Dr. Taufik Valiante, who along with the rest of the epilepsy team, developed a hypothesis that the seizures were being cause by a problem in Brooke’s right temporal lobe. In order to confirm the diagnosis, on March 5, 2015, Brooke had electrodes placed deep in her brain to monitor seizure activity in a procedure called intracranial monitoring. Shortly afterward, the diagnosis was confirmed and the epilepsy team was able to craft a plan for surgery. On June, 15, 2015, Dr. Valiante removed the portion of Brooke’s brain responsible for her seizures.
Baby bump
The surgery was a success and six months later Brooke was seizure-free and back on her feet enjoying life when her recovery was dealt yet another unexpected curveball – she learned she was pregnant.
Brooke and her partner Shawn Grey with baby Myles
“I was a little worried, since I was still recovering. I wanted to do everything I could to have a healthy baby.” Fortunately for Brooke, UHN has a team of professionals – neurologists, high-risk obstetricians, endocrinologists, epilepsy nurse practitioners, epilepsy nurses and social workers – dedicated to helping pregnant women with epilepsy.
“UHN’s specialized epilepsy and pregnancy clinic focuses on pre-conception counselling, pregnancy care and post-partum care and safety,” explains Dr. Esther Bui, a neurologist who heads the epilepsy pregnancy program. According to Dr. Bui, pregnant women with epilepsy are often concerned about the effects of medications on the developing fetus, the impact of seizures during pregnancy and in the post-partum period as well as the risk of passing epilepsy onto their child.
Not unusual
Dr. Bui says it’s not unusual for women like Brooke to become pregnant so soon after surgery for epilepsy. “Many patients consciously wait until after surgery to conceive so they can be more confident in their seizure management. If seizures become better or well controlled following surgery, some women make the decision to try to conceive,” says Dr. Bui.
Brooke met with Dr. Bui once a month throughout the pregnancy and was in touch with other members of the team, including Darcia, right up until the days before she and her and partner, Shawn, welcomed Myles into the world on July 6, 2016.
“Myles is my dream come true,” says Brooke. “I am grateful every day that there was someone in place each step of the way, from Dr. Carlen to Dr. Valiante to Dr. Bui and then Darcia and the rest of the epilepsy team, to answer my questions and support me. They made me feel like I could do this. ”
As she reflects back with a great deal of perspective on her journey, Brooke has a few words of advice for others who are may be thinking about following in her footsteps.
“If there is another woman with epilepsy out there who wants to have a baby I would say to her, ‘Don’t give up, trust the system and try to stay positive,'” she says.