Eight-year-old Carson has been a life-long patient at Children’s Hospital Colorado.
“We call him the mayor because he knows everyone and waves to everyone,” said Holly Knotowicz, speech and language pathologist at Children’s Colorado.
Carson was born at just 25 weeks after his mom, Jennifer, underwent an emergency cesarean section. Weighing one pound, 12 ounces, he was immediately put on a ventilator and three days later moved to a continuous positive airway pressure (CPAP) machine which helps to regulate breathing patterns during sleep.
Severely premature babies, like Carson, run the risk of developing bleeds in the brain. At six days old, doctors discovered a bilateral bleed in Carson’s brain, which required immediate placement of a shunt to drain the excess fluid that was pooling around his brain and creating a dangerous level of pressure. This life-saving intervention would mean multiple shunt revision surgeries later in his life.
After spending 111 days in the Neonatal Intensive-Care Unit, Carson finally went home for the first time.
“We knew the word Cerebral Palsy was going to enter our lives, but you still aren’t ready for it anytime you hear it,” said Jennifer. “You’re not ready to accept that your child is going to have something for life.”
At 13 months old, Carson was diagnosed with Cerebral Palsy, a disorder affecting movement, muscle tone and posture. With intense therapy, Carson was able to learn to walk and run, however, his abnormal gait was inefficient and caused him to expend twice the effort to perform everyday functions. This extreme energy output made growth challenging and left Carson noticeably smaller than other kids his age.
The answer to providing Carson a better quality of life came in the form of a complicated and high-risk surgery: the selective dorsal rhizotomy. The procedure is a neuro-spinal surgery in which doctors cut specific muscle sensory nerve fibers that feed into the spinal cord in an effort to correct the debilitating spasticity experienced by Cerebral Palsy patients.
After careful consideration by Carson’s family and care team, neurosurgeon Dr. Corbett Wilkinson successfully performed the surgery in November 2015.
“Carson was a great candidate for this surgery and has had a really good response,” said Dr. Wilkinson. “He does what he needs to do to get the most out of the surgery.”
Carson spent six weeks as an inpatient at Children’s Colorado after his surgery, participating in intensive physical and occupational therapy, making progress every day.
While it could take up to two years to fully realize the benefits of the surgery, Carson and his family are optimistic and encouraged by the increased mobility and progress that is already visible.
Carson’s mother cherished the support her family received from Children’s Colorado and noted it was what they would miss most after their stay.
“There are pluses and minuses to living in the hospital,” said Jennifer. “The staff is the thing we will miss the most when we leave. They are amazing and everyone just cares so much.”
The Spirit of a Champion
Today, Carson is living at home with his mom, dad and 11-year-old brother, Tanner. Family support and inspiration from friends he made while in the hospital have helped motivate him to work hard in therapy, and he continues to see improvements in his walking and motor skills at his daily therapy sessions.
“We know he has the spirit of a champion and nothing will hold him back,” said Carson’s dad, Christopher.