Josh's story: Innovative surgery helps teenage soccer star wins the match with spina bifida

Josh was born with spina bifida, a deformation of the spinal cord that can result in cognitive and physical impairments. On the day of his birth, Mass General for Children (MGfC) neurosurgeon William Butler, MD, performed emergency surgery to close the opening in his spine. Four days later, he placed a shunt in Josh’s brain to treat hydrocephalus, an accumulation of spinal fluid in the brain. The shunt, which drains excess fluid into Josh’s abdomen, permanently altered Josh’s life. The shunt’s tubing is visible on Josh’s neck and abdomen. And the device, though necessary, came with a risk: On a yearly basis, about 10% of patients with shunts develop infections that can result in severe illness and hospitalization.

For years, Josh was a part of the lucky 90%, and remained infection free. Outside of occasional check-ins with Dr. Butler, he lived a normal childhood. His early medical challenges gave him a positive outlook. His magnetic smile was contagious. One of four boys, soccer quickly became his passion.

“Since I was little, soccer has been a big thing in my family,” says Josh who, as a freshman, made Kipp Academy’s varsity team. “It’s an outlet,” he adds. “When I’m angry or sad, I play soccer.”

But now, sixteen years later, something was wrong. Three days after his visit to the school nurse, Josh’s symptoms worsened. He developed a fever, nausea and a severe headache. “I couldn’t bear the pain,” recalls Josh, who typically loves being the center of attention in his close-knit family.

When Josh’s condition didn’t improve, his parents, Cecilia and German, rushed him to the emergency room at Mass General for Children. After tests ruled out the flu or a urinary tract infection, doctors feared it might be something more serious. Dr. Butler again was called in, and this time he had bad news: The shunt which once provided him an active childhood was infected and emergency surgery was needed to remove it.

Installing another shunt was an option but Dr. Butler knew that at some point in the future his young patient would be at risk of another infection. Instead, the neurosurgeon determined Josh was a candidate for a surgery known as an endoscopic third ventrisculostomy.

The procedure involves creating an opening in the third ventricle of the brain and redirecting excess spinal fluid to other parts of the body where it can be absorbed normally. Pioneered at Mass General in 1922, it is a complicated surgery that was seldom used in the decades before modern endoscopic technology was improved at places like Mass General. If successful, the operation would allow Josh to live without a shunt.

“I’m privileged to be at this institution where we lead innovations in this area,” says Dr. Butler, still one of only a handful of doctors who specialize in the procedure, which is still not widely available as a treatment for hydrocephalus, or excess fluid on the brain.

There was a 30% chance that the surgery would be ineffective, and Josh would have to go back to the uncertainty of life with a shunt. But after so many years of care at MGfC, the Canales family had full confidence in Dr. Butler and his colleagues.

“To be with somebody who knows your story, knows what you’ve been through, knows everything about you in medical and personal terms is great,” says Josh. “I’ve known Dr. Butler for 16 years. The one word that comes to mind when I think of him is trust.”

Following the surgery, Josh spent several weeks at MGfC. He missed school, soccer and his friends. He did find distraction from the pain of surgery via the hospital’s music therapy program and even fostered a love for the guitar. And as the days passed, it became increasingly clear that Josh would now enjoy a life free of hydrocephalus and the fear of another shunt infection.

Opening the door to a shunt-free future was gratifying for the neurosurgeon who had cared for Josh since birth. “You become a doctor because you want to help people,” Dr. Butler reflects. “You work and work, the training and hours are long. But what you learn works if you apply it carefully in a measured way. With a patient like Josh, everything you’ve worked toward becomes real.”

These days, as Josh runs drills on his high school soccer field, he keeps his dark, curly hair tied in a ponytail, and wears a Cristiano Ronaldo jersey, in honor of his favorite soccer player. It is impossible to tell that, just six months ago, the athlete was undergoing a rare brain surgery. Indeed, when the play calls for it, Josh thinks nothing of jumping into the air and passing the ball with his head.

“With the shunt out, I feel care free,” Josh says. “It’s like I’ve had 1,000 pounds lifted off my shoulders.”

Mass General for Children is devoted to caring for pediatric patients from birth through adolescence and beyond. Learn what you can do to help children like Josh.