If your child is experiencing a mental health emergency or at imminent risk for harm, call 911 or go to the nearest emergency department for a mental health evaluation.
Levi is only 11 years old; and yet his powerful story of perseverance through the depths of deep mental health challenges – while battling a rare, life-long painful spine condition – is already deeply inspiring.
Levi’s complex care journey began at birth when his mom, Sarah, held her newborn for the first time. During those priceless moments, she felt a bulge on her son’s back. Sarah quickly learned from her local hospital’s care team that the bump was a previously undiagnosed form of spina bifida called myelomeningocele. This meant Levi’s spine did not form normally during pregnancy, so the newborn had a gap in the bones of his spine.
The condition could have led to permanent complications including trouble moving his legs or even paralysis, so his care team took quick action. Shortly after arriving in the world, Levi was prepped for surgery to repair his spine. It would be the first of many procedures performed during the first decade-plus of his young life.
‘No escape from the pain’
At around when Levi was 6 years old and now under the care of The Kid Experts® at Children’s Minnesota, he was diagnosed with an ultra-rare, non-curable spine disorder called catastrophic adhesive arachnoiditis. According to the National Institutes of Health (NIH), arachnoiditis happens when one of the membranes that surround and protect the nerves of Levi’s spinal cord, called the arachnoid, becomes inflamed. The NIH warns arachnoiditis affects the function of nerves, and it can cause stinging and burning pain in the lower back or legs. For Levi, his form of the disorder is the rarest of the rare with few medical options available to help relieve his constant, excruciating pain.
“There was no escape from the pain,” Sarah recalled. “It’s so intense it affects Levi’s brain pressure, it changes his brain chemistry, and impacted his mental health and personality.”
The intense pain eventually led to Levi showing heartbreaking warning signs of declining mental health.
“I felt hopeless, I felt scared, I felt sad, I didn’t want to be here anymore,” Levi shared in an emotional interview.
‘Things got intense’
After a long battle with both physical and mental pain, Levi’s family rushed him to the Emergency Department (ED) at Children’s Minnesota in St. Paul. There, he was admitted to the hospital’s inpatient mental health unit. The specially designed unit is one of only a handful in the country to allow a parent or guardian to stay overnight with their child. It’s also one of only a few facilities in Minnesota with the ability to admit and care for kids who also have complex medical conditions like Levi.
“Things got intense,” Sarah explained.
Over the course of his stay in the inpatient mental health unit, Levi’s dark thoughts started to subside with the help of a multi-disciplinary care team. For Levi, his individualized treatment plan included care from pediatric psychiatrists, psychologists, licensed clinical social workers, nurses, child life therapists, mental health specialists, music and art therapists and occupational therapists.
“Levi relies on movement therapy to survive and get him out of the physical pain,” Sarah said. “The pain that has created his mental struggles.”
Continued care
After spending a week in the inpatient mental health unit, Levi was discharged and soon started treatment at Children’s Minnesota’s partial hospitalization mental health program (PHP). The PHP is structured mental health treatment designed for kids ages 6-18 who are struggling with emotional and behavioral concerns. Patients participate in intensive day programs during weekdays and return home to their families on evenings and weekends. The goal is to improve mental health symptoms and teach coping skills necessary for improved function at home and school. After completing the program in November 2023, Levi says he now puts the skills he learned in the PHP to use during his tougher moments.
“It’s gotten better, it’s not 100% but it’s not 0%,” Levi said about his improving mental health.
Levi’s brave journey continues
Levi’s care journey has been a long and winding road since his birth – from procedures to help with his spina bifida, to combatting the severe pain of his spinal disorder; to overcoming the anguish of his mental health crisis. He’ll continue to receive care at Children’s Minnesota for these challenges throughout his childhood and young adulthood.
Levi’s story is one of countless currently unfolding during a nationwide mental health crisis affecting kids and teens. Each year at Children’s Minnesota, it is estimated that over 1,000 of our region’s children and adolescents will receive care at the organization’s inpatient mental health unit.
If your child is experiencing a mental health emergency or at imminent risk for harm, call 911 or go to the nearest emergency department for a mental health evaluation.