Malcolm’s Story: Vision Health Month

Vision Health Month is a time to focus on eye health and vision care, encouraging protective measures to protect and maintain healthy vision. Grandview Kids parent, Jessica, shares her family’s journey with their 3-year-old son Malcolm’s vision loss due to Septo-optic dysplasia (SOD). Though there is currently no known way to prevent SOD, early detection and treatment through therapy and support can help manage the symptoms. 

Jessica and Mac have three sons, Keith, Theodore and Malcolm. When Jessica was pregnant with Malcolm, she had planned to have a home birth, but because he arrived well past his due date, they had to change their birth plan and have him at a hospital. This hiccup turned out to be a blessing in disguise. There were complications shortly after his birth as Malcolm’s body went into an adrenal crisis, his body temperature dropped, he was not feeding and his blood sugar was extremely low. They were admitted to the hospital’s neonatal intensive care unit (NICU) for a few weeks and connected with SickKids Hospital to be seen by the endocrine and ophthalmology departments. Malcolm was diagnosed with SOD (also known as de Morsier syndrome). This rare congenital malformation is characterized by the underdevelopment of the optic nerve while in utero, leading to blindness, adrenal insufficiency, diabetes insipidus and hypothyroidism. Malcolm also has secondary diagnoses of infantile spasms, hemophilia A and Chiari Malformation.  

“We were in denial for a long time with regards to his vision loss. Searching for answers or interventions that would give us some hope that he could see something,” Jessica recalls. “We feared what blindness meant for his already so complex life. Vision is a huge part of our enjoyment, and we placed that same expectation on Malcolm’s life.”  

To keep up with the growing list of Malcolm’s medical complexities, his care team connected his parents to Grandview Kids’ Complex Care Program and began receiving therapies. “You don’t want to be part of the Complex Care Program,” Jessica admits, “But it has been lifesaving.” She credits the Complex Care Program for the smooth management and communication of Malcolm’s appointments, medical professionals and connections. The Complex Care team provided consistency, relieving the overwhelm brought on by what felt like endless new diagnoses and care teams. Now, through Grandview Kids, they interact with the same people who know everything about Malcolm. Rather than addressing issues in isolation, they approach Malcolm’s care holistically and family-centred. 

Malcolm relies on his parents, siblings and medical professionals to guide him in his life. He will be four years old this year, and his parents are realizing now that he is not transitioning to a more independent life like most toddlers at his age. He is still very dependent on his parents and the people around him, although he tries to show independence in his decisions and likes and dislikes. Malcolm has a unique personality for a child who, on paper, has many things that he must fight against and work hard for. He communicates his wants and needs through facial expressions, cries, laughs or loud noises so people will know he needs attention. He is beginning to say a few words, recognizing how to call upon different family members when he wants them. Malcolm is learning to adapt to his environment, demonstrating excitement, interest or pleasure through rocking back and forth and showing disinterest by pushing away objects with his hands or baring his teeth. 

As Jessica and Mac prepare for Malcolm’s transition to school, they are excited to know that he will attend Grandview School for Junior Kindergarten with a team who know and love him. Although it does not take away from the stress of a new season, they know he will receive the services, support and opportunities to thrive in and enjoy school.  

Malcolm has taught his family invaluable life lessons. They have learned the importance of remaining present, enjoying their family now and not dwelling on the stress of milestones and what Malcolm’s future will look like. Jessica acknowledges that “[They] are so different as a family because of Malcolm.” Her sons’ report cards “scream empathy” as they demonstrate character development made possible only through lived experience. “They are always trying to understand and help others out and be their support systems. This is because of Malcolm.” 

“Malcolm was born blind and doesn’t know a life with sight. His life is still so enriched with the sounds of his favourite songs, his dad signing bedtime prayers, the heat from the sun on his face, the wind blowing in his hair and the excited voices of his brothers. He has taught us to appreciate every little thing around us, not just the obvious visual things.”