Gabi, 12, of Bethesda has hydrocephalus, a disorder in which the body’s cerebrospinal fluid — which normally acts as a cushion for the brain and spine — fails to circulate properly, causing a high-pressure buildup of the fluid in the brain. Approximately 1 million people in the United States have the disorder, according to the Hydrocephalus Research Fund.
The disorder can lead to irritability, sleepiness and changes in personality and cognitive ability, according to the National Library of Medicine. In some cases, it can cause blindness.
Without treatment, according to the library, six in 10 patients will die of hydrocephalus. There is no cure.
On June 28, Gabi’s family took a stand against the disorder, joining the Hydrocephalus Association in an “advocacy day” on Capitol Hill.
Gabi and her mother, Amanda Garzon, joined members of the organization in petitioning Rep. Chris Van Hollen (D-Md.) of the 8th District for more funding for hydrocephalus research. The advocacy day was part of the association’s five-day conference.
“Now Gabi sees the range of issues people with hydrocephalus deal with,” Garzon said.
Developmentally, Gabi looks and acts like most girls her age. Her condition has caused some learning disabilities, however, and she struggles with attention deficit hyperactivity disorder, working memory and language processing, Garzon said.
Those disabilities have in turn brought on a secondary condition of anxiety.
“I think her anxiety stems from when she was little and we’d worry that she was behind,” Garzon said. “Like, ‘She’s not rolling over,’ and then she’d roll over. And we’d say, ‘OK, but she’s not walking.’ ”
To treat hydrocephalus, neurosurgeons place flexible tubes in the brain to redirect the fluid to other parts of the body — often the stomach — where it can be absorbed. These “shunts” are unreliable, however, and patients often must undergo surgery to correct shunt blockage or placement. Gabi’s most recent shunt revision occurred in October 2010.
Because her shunts can fail, Gabi must differentiate between normal headaches and “shunt headaches,” which indicate a more serious problem.
“With shunt headaches, I feel my brain pounding against my skull,” Gabi said. “It is so darn painful.”
Hydrocephalus can stem from many causes. Gabi became hydrocephalic because of a brain hemorrhage soon after her premature birth. The doctors don’t know what caused the hemorrhage, but Garzon suspects Gabi’s disposition had something to do with it.
“She was kicking and screaming so much when she was born, and sometimes I think that’s what caused it,” she said. “She’s always been a fighter.”