BY JIM HOWE
The urge to help a 6-year-old Vernon girl and others with a painful disorder has inspired her parents and her surgeon.
Tom and Kim Clough’s daughter, Elyse, has a condition in which fluid builds up to dangerous levels in the brain.
Elyse was 4 months old when her parents noticed her eyes rolling downward, a symptom of hydrocephalus. At Upstate Golisano Children’s Hospital they learned the only current solution was brain surgery.
Neurosurgeon Satish Krishnamurthy, MD, implanted a tube called a shunt to drain the fluid into her belly.
Patients with shunts can develop infections and blockages, must be monitored and often need corrective surgery.
Elyse needed emergency surgery about a month after her first shunt, Tom Clough says. She got her sixth shunt in February. Hospital visits terrify her.
The Cloughs’ frustrations led them to become advocates for an alternative treatment for hydrocephalus.
“There’s a 40 percent chance that a kid with a shunt will be a productive member of society. And that is unacceptable,” Clough says.
Krishnamurthy’s research is examining the theory of the brain as a plastic bag that needs to be tapped. What if the brain were more of a tea bag, he says, and medication, not surgery, could drain excess fluid? It would be a chemical, rather than physical, problem and solution, he says.
The Cloughs are grateful to Krishnamurthy and support his research as well as a bill introduced last year in the U.S. House of Representatives to expand and promote hydrocephalus research.
Seeking a better way to treat hydrocephalus
Central New York families of people with hydrocephalus created a support organization in 2010 called REaCH. That stands for Research, Educate and Cure Hydrocephalus. Tom Clough is president.
The group has donated $10,000 toward Krishnamurthy’s research to find a medication that can cure hydrocephalus without the need for surgery.
To contribute to the Hydrocephalus Research Fund, contact the Upstate Foundation at 315-464-4416.
This article appears in the summer 2016 issue of Upstate Health magazine. Hear a radio interview with Krishnamurthy and Tom Clough.