Tonawanda News

Features

November 10, 2013

WNY chapter of Hydrocephalus Association support group launches

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.”

Text Only
Features
  • SUN LIFE Volunteers honored 1 040614.jpg Women Who Move the City (and beyond)

    April 7, 2014 2 Photos

  • SUN LIFE POUND 1040614j jpg.jpg Rock n' roll fitness

    April 7, 2014 1 Photo

  • sig - crib notes RGB Enough of this winter -- it's time for spring

    Midway through separating the bits of dog food from the shredded paper towel pieces on the saturated bed sheet that had been strewn across the dining-room table, I finally realized I’d had enough.

    April 7, 2014 1 Photo

  • sig - critter companions RGB Dear readers, it's me, Kenny

    I have bad knees. I have been told to blame my grandmother. I have also been told to blame her for my love of animals. Today, we celebrate the 100th Critter Companions column.

    April 7, 2014 1 Photo

  • SUN LIFE mummies 1 033014.jpg 'Mummies of the World' exhibit arrives in Buffalo

    As visitors arrived for the recent NCAA basketball tournament games in Buffalo, a much older group of visitors arrived via motorcade at the Buffalo Museum of Science — but these newcomers to the Queen City wouldn’t be seeking out a place to have a beer between games or where to find the region’s best chicken wings.

    March 31, 2014 1 Photo

  • sig - double trouble RGB Years later, still spending sunny days on Sesame Street

    I always knew we’d hit “the Elmo years.”

    Going into parenthood, it seemed like a given. Both my husband and I  were “Sesame Street” fans from childhood ourselves, and we were happy enough to pass it on to a new generation. And we knew, having friends with children of the applicable age, that in this day and age “Sesame Street” equalled Elmo, the squeaky-voiced “furry red menace” (thus dubbed by Oscar the Grouch) of parents everywhere.

    March 31, 2014 1 Photo

  • SUN LIFE Local Restaurant Week 2 033014.jpg Back for another bite

    As spring finally starts to unfold in Western New York, residents are likely eager to get out of their houses — and organizers of Local Restaurant Week hope they’ll consider eating out as they do that.

    March 31, 2014 1 Photo

  • Wineries invite visitors to take a Taste of the Trail

    If one weekend of food and wine pairings is a good thing, two weekends of food and wine pairings must be even better.

    For the first time, the Taste of the Trail event, which takes place Friday through April 6 and April 11 to 13 on the Niagara Wine Trail, will be split into two weekends, with half the trail’s wineries taking part the first weekend and half the second, said Elizabeth Maute, wine trail coordinator.

    March 31, 2014

  • sig - critter companions RGB CRITTER COMPANIONS: Rewards for playing nice

    March 31, 2014 1 Photo

  • SUN LIFE signs of spring 1 032314.jpg Region's favorite signs of spring gear up for season

    Ah, the signs of spring: The birdsong, the flowers, the green grass, the flowing waters of the Erie Canal or Niagara River ... and the words “Opening soon” on the marquee of your favorite seasonal business.

    March 24, 2014 1 Photo