Perseverance and a Team of Experts Helped Marcus Navigate a Rare Diagnosis
January 27, 2023
After diagnosing Marcus with a rare instability in his neck, his expert care team quickly developed a plan to prevent him from having more strokes.
Just as the world was shutting down due to the COVID-19 pandemic at the beginning of 2020, Marcus, who was 7 at the time, started experiencing sporadic headaches. A few months later in July, he collided with the family dog and collapsed, complaining about seeing double and having headaches. His parents took him to the hospital and doctors couldn’t find anything wrong with him. Later that year, in the fall, Marcus started having the same symptoms. After another trip to the hospital and several tests, doctors referred him to a neurologist. At that time, doctors thought the symptoms were from childhood migraines.
Right after Christmas, almost a year after his symptoms had started, things got worse. “Marcus was increasingly lethargic. He was having similar issues and sleeping for extended periods of time,” said his mom, Stephanie. “He couldn’t even lift his head up, and we kept encouraging him to get some rest.” His pediatrician recommended he get an MRI, and on Jan. 7, when Marcus spiked a fever and had slept almost 18 hours, his mom took him to the ER. He received a CT scan, and it showed three areas of stroke on his brain. His parents asked for him to be taken to Children’s Hospital Colorado. There, he was immediately airlifted to Children’s and admitted into the pediatric intensive care unit (PICU).
After months of not knowing what was causing Marcus’ symptoms, doctors at Children’s Colorado were able to quickly diagnose that he had an instability in his neck. “To be at Children’s Colorado was amazing,” said Adam, Marcus’ dad. “Within 24 hours they found what was causing the strokes.” Marcus’ C1 and C2 vertebrae had never grown and developed as they should have. This structural abnormality resulted in a tear on Marcus’ vertebral artery, which was causing the strokes. Marcus was one of 30-50 kids in the world to have been diagnosed with this rare type of stroke. Despite its rarity, doctors at Children’s Colorado knew just what to do and had the expertise needed to treat this condition.
Tim Bernard, MD, director of the Childhood Stroke Program, and Todd Hankinson, MD, division head of pediatric neurosurgery, developed a plan to prevent Marcus from having more strokes. Marcus wore a neck collar for stability until surgeons could perform a spine fusion on his vertebrae. After the eight-hour surgery, Marcus remained in a neck collar for another 12 weeks. “He was a champion. His attitude and his perseverance—he had a desire to get better and move on and continues that to this day,” said Stephanie.
Dr. Hankinson and Dr. Bernard partnered with Marcus and his family in his care for several years. Prior to surgery, Marcus experienced some setbacks, including memory problems and balance and spatial awareness, but those have since resolved. And most importantly, Marcus hasn’t had any more strokes since he first came to Children’s Colorado and was admitted into the PICU.
He continues to see Dr. Bernard on an annual basis. “Today, we are living our normal lives,” said Adam. “Marcus got the right diagnosis, the right care and the right treatment.”
Despite the highs and lows of Marcus’ ordeal, he remained positive throughout his journey. “Marcus’ health journey made us better people and made us care about what matters. He led us through,” said Stephanie. “We were so lucky to have not just regional experts, but the world’s experts so close to where we live.”
Today Marcus is a funny, independent 9-year-old who loves to play baseball and soccer. “He’s literally everyone’s favorite person,” said Stephanie. “There is no one on the planet like him. He’s the most amazing person you’ve ever met. He is proud to be an ambassador and to raise money for the Stroke Clinic at Children’s Hospital Colorado. “They saved my life,” added Marcus.