Tonawanda News

November 10, 2013

WNY chapter of Hydrocephalus Association support group launches

Staff reports
The Tonawanda News

Tonawanda News — When Toddie Rogers found out her 4-month-old daughter, Ashley Harris, was diagnosed with hydrocephalus, the mother of two said she felt a little lost.

The condition, which translates literally to water on the brain, can be caused by any number of other conditions and diseases, and each patient experiences it — and is treated — differently.

And that’s why the Buffalo resident wanted to start the Western New York chapter of the Hydrocephalus Association support group.

The National Institutes of Health website says hydrocephalus can occur in-utero, shortly after birth or it can even result from meningitis, tumors or traumatic brain injuries in adulthood. Some patients are treated with a shunt to drain the excess cerebral spinal fluid, often into the abdomen, and some are treated with something called a third ventriculostomy, in which a hole is created in the third ventricle in the brain, also allowing the excess fluid to drain as it should.

“What was really difficult was trying to understand that I couldn’t take someone else’s situation with hydrocephalus and apply it to Ashley,” Rogers said.”Everyone who has it all shows the same symptoms but doesn’t necessarily have the same difficulty with it.”

Not many many people suffer from the condition — a 2008 study by the University of Utah says it accounts for 0.6 percent of all pediatric hospital admissions in the United States — so the few Rogers did meet didn’t necessarily share her own experiences.

It took years, for instance, before Rogers even met an adult who suffered from the disorder, causing her to worry about what was in store for her daughter’s future.

“I just fell to my knees and cried,” she said, when she first met an adult with hydrocephalus. “I didn’t meet an adult for the first almost four years of my daughter’s life.”

After seven years of treatment, multiple hospitalizations, and two surgeries to install and fix a shunt in Ashley’s brain, Rogers launched the Western New York chapter of the Hydrocephalus Association support group to help provide other parents and adult sufferers a place to share their experiences with the disorder.

The group, which meets on the second Wednesday of every other month at the Parent Network of Western New York in Buffalo, was launched in April.

“We talk about how hydrocephalus affects our lives,” Rogers said. “We try to provide emotional support as well as intellectual support for each other.”

The support group’s next meeting is scheduled for 6 to 8 p.m. Dec. 11 at the 1000 Main St., Buffalo, NY 14202.

IF YOU GO • WHAT: Meeting of the Western New York chapter of the Hydrocephalus Association support group • WHEN: 6-8 p.m. Dec. 11 • WHERE: Parent Network of Western New York, 1000 Main St., Buffalo • MORE INFORMATION: Visit www.hydroassoc.org, or email Toddie Rogers at trogersBuffnyhydroassoc@gmail.com