Sophia’s Story: A Caregiver’s Journey

Like birthdays and anniversaries, November 12, 2017 will forever be a date etched in my memory. My daughter, Sophia had a fever and fell asleep on my husband. It was so sweet that I took a picture. Little did I know this picture would represent the start of a long journey for our family, her headaches, confusion, anger, our countless trips to doctors’ offices, the Emergency Room and eventually, hospitalization.

Sofia sleeping with her dad, Mark Gould

For the first seven years of her life, Sophia was a happy and healthy little girl. After her fever that November day, she started experiencing debilitating headaches and changes to her personality. She would have angry outbursts and spontaneously start crying. She was confused and forgetful.  

In the weeks that followed, her symptoms were dismissed by doctors as a sinus infection or migraines. My husband and I knew it was something more and fought hard to get her the care she needed. She was hospitalized at one point and given anti-migraine medicine and steroids. In hindsight, she improved each time she was on steroids, but the effects were short-lived once her taper was finished.  

Sophia missed numerous days of school during this time. On a day she was going back, she had a massive absent seizure in our living room. Her entire body froze, and her eyes became fixated on the ceiling. Somehow, I knew she was having a seizure, but didn’t think to call 911. We carried her to the car and drove to the nearest hospital 10 minutes away.

Watching our little girl seize in the ER while doctors frantically worked to stabilize her was terrifying. The sheets were soaked with blood from failed IVs. She seized off and on for what seemed like an eternity. As soon as she was stable, she was transported to a larger hospital. I realized the severity of the situation when the critical care team rode with us for the 20-minute ambulance trip.

Sophia was in and out of consciousness for the next few days. An MRI confirmed encephalitis, but they could not determine the cause. The head of the PICU sat us down and recommended we transfer to one of the teaching hospitals in the area. I will always be grateful to him for his candor about the complexity of her condition and his incredible empathy.

We embarked on another ambulance ride, with the same critical care team, this time to an even bigger hospital. We were met with a revolving door of specialists; Hematologists, Oncologists, Infectious Disease Specialists, Neurologists, Rheumatologists, all trying to determine the cause of her encephalitis. We racked our brains in answering their questions. Could it be the alligators we fed on vacation? Or the beach we went to after a hurricane? Was she scratched by an animal or bitten by a tick? 

Sophia continued in the throes of encephalitis, becoming extremely angry and agitated. Her arm was strapped to a board, so she wouldn’t rip out her IV. She was violent; punching doctors, EEG techs and the IV team. I’m certain her screaming woke up the entire floor at night. She developed facial tics and auditory hallucinations. One night, her oxygen levels were dangerously low, and her PICU nurse and I spent the entire night watching the monitors, holding oxygen by her face.

Sophia lying in the hospital bed, sleeping
Sophia and her brother in the hospital bed smiling

After a few days of IV steroids and IVIG, Sophia began to wake up. The excitement that she was starting to get better was tempered by the realization we had lost part of our little girl. She had absolutely no memory of her little brother and had lost a significant amount of her vocabulary. It was devastating. However, over the next few days, she made an amazing recovery and was getting closer to the Sophia we knew before this illness.

Her diagnosis at discharge was Seronegative Autoimmune Encephalitis. However, two days after she was discharged, she experienced Optic Neuritis. She was hospitalized again for another round of IV steroids. Thankfully, her doctors were aware of MOGAD and immediately sent her blood to the Mayo Clinic for MOG Antibody testing. A week later, we received her positive test result.

Sophia was diagnosed with MOGAD within three months of initial symptoms. Her case exemplifies being in the right place at the right time and I am forever grateful to her doctors for that. For many MOGAD patients, the diagnosis journey is much longer. Sophia has made nearly a full recovery, her brain lesions have healed and while she still struggles with vision issues, she tests at 20-20. She has remained fairly stable the past few years and continues to take immunosuppressants to keep the MOG antibody at bay.

Sophia in the treatment center with glasses and smiling
Sophia with mask getting her infusion in the treatment center

Our lives have been forever changed. There will always be a line representing Sophia’s MOGAD diagnosis in our family’s timeline. During this journey, we have met incredible people who are part of the MOGAD community. I am a Board Member and Pediatric Ambassador for The MOG Project. Working with this amazing organization has enabled me to channel my anxiety, frustration, and fear over Sophia’s diagnosis into something productive. I am so proud of the resources, support, and advocacy we provide for MOGAD patients and their caregivers every day.

Sophia continues to face her challenges head-on with strength and perseverance. She is funny, artistic, beautiful, a talented musician and an amazing person. Our family hopes that over time, MOGAD becomes a smaller part of our life. For now, we’ll face the challenges together, with courage, strength, a few tears, and a lot of love.

The Gould Family: Jennifer, Mark, Sophia and Sebastian
Beautiful Sophia with long light brown hair looking off to the side, healthy and content

By Jennifer Gould, Director of Pediatric Research Advocacy and Executive Board Member of The MOG Project