Janae’s Story: Paediatric Stroke Awareness Month

When 25-year-old Janae is not studying, she professes her love of singing, going for walks and spending time with friends and family. She graduated from Toronto Metropolitan University, receiving a Bachelor of Social Work (BSW) degree with distinction, and is currently pursuing her Master of Social Work (MSW) with a focus on children and families at the University of Toronto. Janae’s studious disposition stems from her mom, Catherine’s, unwavering validation and her desire to support children and youth with physical, communication and developmental needs and their families. Her lived experience, although riddled with barriers paired with social challenges due to her exceptionalities, has compelled her to become an advocate for others. 

Janae was born several weeks early and had a low birth weight but was otherwise deemed healthy enough to go home. However, in the two weeks that she was home, Catherine, a paediatric Registered Nurse at SickKids Hospital, noticed that Janae was not breathing or sucking appropriately. She brought her to a local hospital twice, only to be dismissed as suffering from postpartum depression. Intuition led her to visit SickKids Hospital, where Janae was admitted and diagnosed with congenital heart disease (CHD). A procedure called a “cardiac catheterization” revealed several heart defects and the need for heart surgery. However, post-procedure, Janae suffered a massive stroke. The initial prognosis was poor, prompting her physician to plainly state that Janae’s condition was “incompatible with life.” This life-altering experience was devastating for Catherine, who thoroughly understood the severity of her daughter’s condition with her medical background, but as a mom, felt it very hard to absorb. 

Janae’s first six months of life were spent at SickKids Hospital. She had several heart repairs and required a temporary feeding tube and a pacemaker. Once stable enough to be home and out of their program, she received home care due to her medically fragile state. Janae received a secondary diagnosis of Cerebral Palsy (CP) as the stroke severely affected the function of her left side, along with her speech and sight. Eventually, her care was transitioned to Grandview Kids, where she would receive many years of Occupational Therapy (OT), Physiotherapy (PT), Speech-Language Pathology (SLP) and care within the Botox ® Clinic.  

With lots of hard work and determination from Janae and her family, Janae learned how to crawl, walk and talk at her own pace. Grandview Kids’ OT supported her by giving her tools to help with school. The stroke caused her left hand to be spastic and at one point they curved inwards and looked fisted. She used grips for pencils and equipment to keep her papers in place for writing, as she did not have the stability to hold them with her left hand. Janae described feelings in her left leg akin to “sleeping” or numbness. Her PT worked on improving Janae’s strength and mobility. In early childhood, she had splints in both hands and legs. She also received Botox ® injections for her left hand and leg, which she continues to do presently, for their effectiveness in reducing spasticity.  

Every developmental stage brings on new challenges, but the biggest hurdle that Janae continues to face is the social aspect of life with exceptionalities. She required special support in school, but kids would question and tease her. “This made me feel very out of place due to the accommodations, but I was just trying to get to the same place everyone else was already at,” Janae admits. High school was harder and meaner when it came to her peers and teachers, who sometimes dismissed her accommodations as trying to get out of certain classes. She connected with another Grandview Kids youth and banded together against the negative social interactions they faced at school. She began to advocate for herself more, vocalizing her needs and requesting support letters from her Grandview Kids PT and Botox ® Clinic physician.  

Catherine ensured that Janae participated in as many Grandview Kids programs as possible to enhance her independence. She attended programs that taught life skills like cooking, dressing and caring for herself, as well as those that provided information on maturing, puberty and body image.  

“Grandview Kids tailored programs to where Janae was based on her capabilities, which is amazing to think that this process began over 20 years ago,” Catherine recalls fondly. “Other kids and youth in the classes had varying disabilities, so she didn’t feel singled out. I took every opportunity for Janae to see not only the negative piece of school but also encouraged her to see that other people were also dealing with challenges in life.”  

Janae confesses that she sometimes still has doubts about her potential, but her mom is and always will be her biggest advocate. “My mom is always saying to do my best and that I’m able to achieve anything. It’s easy to self-doubt and focus on your disability when everyone sees the disability and not who I am. It has been a real struggle to be okay, but I’ve learned that that does not define me as a person,” she openly shares. Her mom has taught her to stop “putting herself in the box” and that she can “overcome the odds.” Janae acknowledges the need for a strong network and support system, as it influenced how she viewed herself as a black woman with a disability navigating life. Catherine’s constant affirmations prompt her to encourage others in their journeys and teach them about the importance of self-advocacy.