I’m Just Sayin’: At first glance, many wouldn’t know his troubles
September is National Hydrocephalus Awareness month, yet very few people are aware of it. Most people say, “Hydro what?” We don’t. Our 6-year-old son Josh has hydrocephalus.
Hydrocephalus used to be called Water on the Brain, but that wasn’t completely accurate. While everyone’s brain has cerebrospinal fluid surrounding it, people with hydrocephalus either produce too much fluid, or more commonly, as in Josh’s case, have a problem with circulating the fluid, which then builds up and causes pressure.
About one in every 500 children born is affected by hydrocephalus, which has many causes (complications of premature birth, tumors, spina bifida, etc.). For others, like Josh, the cause is unknown. It is estimated that more than 1 million Americans have hydrocephalus.
The most common form of treatment is for a neurosurgeon to place a tube called a shunt into the brain to drain off the excess fluid to another part of the body, often the abdomen. Shunts are permanent and once placed will be part of the child’s life forever.
On average, 40,000 shunt operations are performed every year, with more than $1 billion being spent in the U.S. to treat this condition, and about 8% to 10% of these surgeries will result in infections.
Shunts were invented in the 1950s and have not changed much since then. They are not a cure, but simply a treatment, and too often they can become obstructed, infected or malfunction in some other way. It’s estimated that 50% of shunts fail within two years. A failure can cause brain damage and even death in as little as an hour if surgery is not performed in time.
Unfortunately, the symptoms of a shunt failure can look like the flu — headaches, vomiting, lethargy. As parents, we are always watching Josh for signs of a failure and we immediately take him to Childrens Hospital Los Angeles when we even suspect that something could be wrong. Many times it turns out that his shunt is fine, but we can’t take the chance that it could be more serious.
The only way the doctors in the emergency room can check Josh for a shunt failure is to do a CT scan. Josh has had numerous CT scans since he was an infant, and we worry about the long-term effects of so much radiation on his brain, but it’s a risk we have to take.
Many of the children with hydrocephalus have physical, cognitive and social disabilities. They can have vision problems, frequent headaches, learning disabilities and they endure multiple surgeries and hospitalizations. Some never learn to walk or talk.
Josh is one of the lucky ones. After his first surgery when he was 8 months old, and another at age 2, he needed years of physical, occupational and speech therapies to catch up to his peers. To look at him now, though, no one would suspect how much he’s been through.
He’s in a regular classroom at school and reads years above his grade level. He’s outgoing and charming and wants to be a chef when he grows up. I’ll be his very first customer.
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.