Twenty-year-old Emma St. Aubin who was born in Niagara Falls Ontario, is a passionate advocate for people who live with hydrocephalus. She is also equally passionate about athletics, having participated in a variety of sports including swimming, gymnastics, jiu-jitsu, hockey, basketball, skiing and soccer, which is her favourite. Currently, she is studying at Brock University and pursuing a career in pediatric health care so that she might one day work with families of children with various health conditions.
Emma was diagnosed with hydrocephalus when she was six weeks old and had shunt surgery the following week. Although her parents, Jeff and Amy, had many adjustments to make, they decided they would not let Emma’s hydrocephalus deter them. They never treated her any differently from her brother Shawn or held her back from most activities.
If Emma tried her best, whether in school, sports or extracurricular activities, she knew that her parents would be proud of her. “I would not change anything, because I was pushed out of my comfort zone and I as able to have the same opportunities as anyone else.”
Jeff and Amy normalized their daughter’s hydrocephalus. They considered it something that made her unique and they focused on navigating the impact. Whether at school, sports or medical appointments, her family supported and guided her along the way.
As Emma has transitioned into adult care, she practices self-advocacy. She ensures that her questions are answered at medical appointments, that she is accommodated for her educational needs and can have meaningful conversations with others about living with an invisible disability.
Emma’s love of sports offers many physical and social benefits: the camaraderie, leadership opportunities and the friendship she developed. Her coaches were always informed about her condition and knew how to respond in case she had a head injury, fell on the ice, or collided with an opponent. In soccer, her only limitation was head balls, which did not detract her from playing the game.
Emma’s accommodation at Brock includes extra time for tests and exams and use of a computer for longer written exams. This assistance helps her to plan and respond to questions so she’s on equal footing with her classmates.
She also can take regular breaks during the day while taking tests. When she needs to, she lies down to manage her headaches. She has a “headache” hat (an icepack that wraps around her head) for relief. She uses an ergonomic chair, a height-adjustable desk and a room with adjusted lighting for extra comfort.
Emma’s many experiences as a pediatric patient inspired her to pursue a career in health care. She wants to help future patients, and their families have a more comfortable and manageable hospital experience.
She is currently in the second year of the Child Health Program at Brock University.
Emma’s friends have been a great support. Whenever she has upcoming appointments and procedures, they check in on her and offer help in any way they can. Sharing her story about her condition has made it easier to talk about it. She is open about having hydrocephalus and as her friends get to know her, it is a topic that does come up. In their conversations, Emma has learned that many have had or are going through different challenges.
At present, Emma has some heath challenges. She is experiencing intracranial hypotension (low pressure in her skull) from ongoing cerebral spinal fluid (CSF) leaks. This leads to low pressure headaches, brain fog and worsening symptoms the longer she is sitting upright. She has had shunt revisions, multiple procedures including trips to the Mayo Clinic in Minnesota where there is a centre that specializes in patients with CSF leaks.
Emma had to limit her sports and other physical activities she enjoys. Instead, she is active in school clubs and has taken on leadership roles in school as well as outside organizations. In one of her roles as a social media coordinator, she has gained skills in content creation and promotion which she may have not explored before. She has also had to adapt and reduce her university course load so that she can attend school while managing her symptoms.
Emma has been involved with Hydrocephalus Canada since her childhood. Her family held garage sales to raise funds for hydrocephalus Canada. She organized a spirit wheel walk and run event in her community.
In the past few years, she has been more active in raising awareness through various social media campaigns and in sharing her story at events. She worked with Hydrocephalus Canada as a summer student in 2022 and has volunteered. Through all of this, she has made many meaningful connections and gained many new friends.
Emma’s involvement with Hydrocephalus Canada has helped shape who she is today. It has honed her leadership and public speaking skills and made her comfortable advocating and raising awareness.
Emma offers the following advice for someone living with hydrocephalus:
“Push forward to reaching your goals. Living with a condition such as hydrocephalus comes with its challenges. However, it can lead to strength and resilience, allowing you to defy the odds that others have put in place in the assumption of your capabilities. It is important to embrace every challenge as an opportunity to grow. Your perseverance and resilience will shape your path towards success.”
