Sitting in her light-filled condo in downtown Toronto, and breastfeeding her daughter, Alexandra is juggling a lot like every new mother.
When asked about whether she thought she would become a mother, Alexandra admits there wasn’t a lot of information for a young woman living with her disability. She has spastic diplegia, a form of cerebral palsy, and uses a scooter.
“I always knew I really wanted to be a mom, if at all possible,” says Alexandra. “But so much of the health care I received was focused on minimizing pain and maximizing my mobility. Which is great, but I would have loved for someone to have asked me more about my sexual and reproductive health. Intimacy is an important part of your mental and physical well-being, whether you have cerebral palsy or not.”
Alexandra gave birth to Jessica in 2018, while under the care of Sunnybrook’s Accessible Care Pregnancy Clinic. The clinic cares for women who are pregnant or contemplating pregnancy, who have both invisible and visible physical disabilities. Some examples include women who have spinal cord injuries, severe arthritis, spina bifida, a history of trauma such as a car accident, cerebral palsy, multiple sclerosis, a history of amputation, scoliosis, and little people.
“Meeting the care team at Sunnybrook gave me optimism. They looked at me as a whole person, and took time to get to know me,” explains Alexandra.
The clinic has embarked on a large study to learn about women over 18 who identify as having cerebral palsy. The survey looks specifically at reproductive health and pregnancy outcomes. This will hopefully both inform health care providers and be a reference for knowledge-sharing among these women. An in-depth interview will also explore what has shaped their journey, including interactions with health care providers, partners and the wider community.
“It’s important that we understand women’s experiences of living with cerebral palsy as it will lead to better and more informed care,” says Dr. Anne Berndl, maternal fetal medicine specialist at Sunnybrook. “This is a new area of research, that asks women detailed questions about their sexual and reproductive health.”
Alexandra says she wishes more health care providers had taken the time to talk to her about pap tests, pelvic exams and birth control options. “I want to receive health care information and be provided with choices, just like every woman does.”
If you or someone you know would like to get involved in the Cerebral Palsy and Reproductive Health Survey, please visit the study site or email Dr. Anne Berndl. The research team is still recruiting and they value your voice.