BROWNSBURG — Jessica Kozlovic will be celebrating her third birthday this week and she’s come a long way from the day she was born weighing only 3.5 pounds.
Jessica is also suffering from a silent disease that few people know about, but her family is hoping to change that during Hydrocephalus Awareness Month.
In layman’s terms, hydrocephalus is water on the brain. It can be obtained congenitally, through various forms of brain trauma during life, or for senior citizens, what is called normal pressure hydrocephalus. One in every 500 children born is stricken with the disease but it’s often misdiagnosed, which creates complications with treatment.
“It’s something a lot of people aren’t aware of,” says Jessica’s mother, Kathleen Kozlovic. “The ventricles swell up and fill up and then they have to put a shunt in to drain it. Jessica has one that was put in when she was 4 months old and it drains into her stomach so her ventricles stay level. So many people have it and aren’t aware of it. We don’t understand why it’s not out there more.”
Not far away is Julie Hayes, chapter director for the Indiana Pediatric Hydrocephalus Foundation. She too was born with the disease. Forty-two years and six brain surgeries later, she gives startling statistics.
“I know someone that’s 27 and she’s had 98 brain surgeries,” Hayes said. “I know someone who’s had 58 and she’s only 7 years old. Shunts can malfunction. They get an infection. There are a lot of facts people need to know. There are over 1 million known people that have it, and from infants to elderly, people who are shunted spend over $1 billion a year for treatment, shunt replacements, and revisions. The reasons they have so many brain surgeries is because the shunts typically only last two years. Forty percent of a new shunt will fail within the first year. Fifty-five percent will fail in two years, and 80 percent will fail within 10 years.”
Hayes says the sad aspect of this is that in spite of the fact that treatment was developed more than 50 years ago, there have been little to no improvements. Shunts like Hayes’ and Kozlovic’s drain in the peritoneal cavity. Others are forced to drain into the patient’s heart, which creates immense complications. Without treatment, hydrocephalus is deadly. It is sometimes mistaken for Alzheimer’s disease or dementia.
“(Jessica) was blessed because she didn’t have a major form of it,” Kozlovic said. “There are a lot of children that have to live in the womb for awhile with it and they have a lot of other disabilities that go along with it, like cerebral palsy. I just want more people to be aware of it. What causes it? Why is it there? What can cure it? We’d like more people to be aware because there are a lot of children out there with it.
“It’s heartbreaking sometimes to hear about these stories, but they’re there. I think there could be a cure if more research was done. At least something would be there to help more as far as recognizing it a little earlier.”
Jessica had a shunt put in when she was only a few months old and has had two revisions to repair it.
“She’ll have a shunt for the rest of her life,” Kozlovic said. “She can’t get into contact sports, but a lot of other children that have shunts, some of them can’t even walk before they’re 3 or 4. Some of them can’t even talk or just have a lot more disabilities. It’s heartbreaking sometimes to hear about the stories.
“One thing as a parent is you never can let your guard down. You always have to watch them as far as them getting sick, because the same symptoms of a malfunction are the same symptoms of the flu, like vomiting, fever, and seizures.”
Hayes keeps a calendar with a hydrocephalus fact per day to help get the word out and let people know of some of the startling statistics. One last week stood out to her, especially as she later explained the disease to a friend at a local American Legion post.
“Most people don’t know this, but two-thirds of our military — past and present — who’ve developed a traumatic brain injury will develop hydrocephalus because of their injury,” she said. “It is the number one reason for pediatric brain surgery in the United States.”
Hayes and the Kozlovics will continue to fight, hoping to reach others who have the disease and might not know where to turn for support.
“I am no longer allowed to work,” Hayes said. “I’m on disability and they took my driver’s license away because the cerebral spinal fluid built up around my eyes and it’s affected my sight. I have no peripheral vision and no depth perception.”
For more information on the disease and the research to help cure it, visit the website at hydrocephaluskids.org.