I’m Just Sayin’: A burdened child shows remarkable strength

Justin is a typical 7-year old boy. He plays basketball and soccer, is on a Little League team, and is taking piano lessons. What sets Justin apart from his fellow second-graders is that between late July and early November he had four major surgeries on his brain.

Like my 6-year old son, Josh, Justin has hydrocephalus. Hydrocephalus is a buildup of excess cerebrospinal fluid in the ventricles of the brain. This causes pressure and can result in brain damage, physical disabilities, hearing loss, blindness and even death.

There is no cure for hydrocephalus and the standard treatment is to place one end of a shunt tube into the ventricle to drain the excess fluid out, typically to the abdomen. A one-way valve is placed on the tube to regulate the flow. Once a shunt is placed, the child must have one for the rest of his life. Unfortunately, an estimated 50% of shunts fail within two years and must be replaced, often multiple times.

As with most children diagnosed with hydrocephalus, Justin was shunted as an infant, in his case at two-and-a-half months old. He is being raised by his grandparents and, according to his grandmother Jodi, he was doing so well that they almost started to take for granted that he would be one of the very lucky few who would never need a shunt revision.

Then one morning in July, the odds caught up with them and Justin woke up saying that he couldn’t see. He was squinting and trying to focus, so his grandparents took him to his eye doctor, who immediately saw the pressure on his optic nerve and realized his shunt was failing.

Justin had a complete replacement of his valve and tubing at Sutter’s Memorial Hospital in Sacramento, a 90-minute ambulance ride from his hometown. After spending just one day in the hospital to recover, Justin was released and seemed to be recovering quickly and completely.

Then in early September, Justin started showing symptoms of the flu, which often mimic the signs of a shunt failure, and his grandparents took him to their local hospital. The doctors in the emergency room also believed that he had the flu, but Justin’s pediatrician wasn’t comfortable with that diagnosis and sent him back to Sacramento, where they confirmed that he needed another shunt revision.

During the surgery, they discovered that the tubing placed into Justin’s brain in July was too long and that it wasn’t draining the fluid properly. After the tubing was shortened and draining well, Justin was sent home again.

In late October, Justin was again getting sick with flu-like symptoms. His grandparents took him back to their local hospital, where his eye doctor’s husband happened to be on call and was familiar with Justin’s case.

One look into Justin’s eyes and the pressure on the optic nerve was obvious, so he was once again taken to Sacramento, where he became very ill. His heart rate dropped and his grandparents were afraid they were going to lose him. His ventricles had collapsed and on Halloween Justin had his third brain surgery in three months.

Placing a shunt tube into the ventricles of the brain is never easy under the best of circumstances and placement is critical to how the shunt will function. In Justin’s case, this time, the tubing went into the brain tissue and not into the ventricle. As a result, his grandmother says, “he was getting sicker by the minute” and the surgeons operated again on Nov. 1.

As of today, Justin is back at school and shows little sign of the trauma he’s been through. At first he was reluctant to be seen with his shaved head, but his classmates and teacher are compassionate and made him feel comfortable. They’ve known about Justin’s hydrocephalus since he started school.

When Justin’s grandmother explained to one little boy that Justin had had brain surgery, he asked, “Did they give him a new brain?” No, but hopefully this one will last him a very, very long time.

SHARON RAGHAVACHARY is on the steering committee for Crescenta Valley Community Assn. and a member of the Family Advisory Council for Childrens Hospital Los Angeles. She may be reached at sharonchary@gmail.com.