When Susan Slattery-Rogers of Monroe was 13 weeks pregnant with her daughter, Zoe, an ultrasound showed that a ventricle, or chamber, in Zoe’s brain was enlarged, Slattery-Rogers said.
Zoe, now 3, has been diagnosed with hydrocephalus, an often life-threatening brain condition characterized by excessive fluid in the brain. There is no cure for hydrocephalus, and more funding is needed for research, Slattery-Rogers said. The only effective treatments are surgical, according to the website of the Hydrocephalus Association, a nonprofit organization dedicated to research.
At 4 weeks old, Zoe had her first brain surgery to implant a shunt, Slattery-Rogers said, which allows fluid to drain away from the brain. While shunts have a 50 percent failure rate, Zoe has had few issues, Slattery-Rogers said.
“We have been very fortunate,” she said. “She’s our little miracle baby.”
Digital Access for only $0.99
For the most comprehensive local coverage, subscribe today.
Last year, Slattery-Rogers teamed with Christy Ruth, whose daughter also has hydrocephalus, to bring a hydrocephalus walk to the Charlotte area. The walk is intended to raise money for the Hydrocephalus Association. Ruth founded the event, and Slattery-Rogers is co-chairwoman.
The first Greater Charlotte Hydrocephalus Association Walk was held at Charlotte Knights Baseball stadium in Fort Mill in September. In 2013, hydrocephalus walks nationwide raised more than $1.1 million, Slattery-Rogers said.
This year, Charlotte’s second annual Hydrocephalus Association Walk will be Sept. 13 at Elizabeth Park in Charlotte. The goal is to have at least 300 participants raise $30,000.
Slattery-Rogers said she hopes the new location, which puts walkers right by the Levine Children’s Hospital, will increase participation and awareness. She and Ruth say they are hoping the park becomes the walk’s permanent location.
Slattery-Rogers said her pediatrician researched the disease, and that not much is known about it.
“It’s sad that even in the medical field, hydrocephalus isn’t a well-known disease,” she said. “Anyone at any time can get hydrocephalus.”
One to two of every 1,000 babies are born with hydrocephalus, and it is the most common reason for brain surgery in children, according to the Hydrocephalus Association website.
The Hydrocephalus Walk is a networking opportunity for people with hydrocephalus and their family members, Slattery-Rogers said.
“It’s a chance to meet other families so you don’t feel so alone,” she said.
Slattery-Rogers said the Hydrocephalus Association has been a strong resource. “Through them, we are able to get support and meet amazing people,” she said.
The walk will have a variety of family oriented activities, including games and a raffle, Slattery-Rogers said.
“It’s a fun day for a great cause,” she said.