Family continues fight for hydrocephalus research
WESTMORELAND — “Living with Hydrocephalus is like living on pins and needles.”
Tom Clough said life is quite unpredictable for his soon-to-be 9-year-old daughter Elyse, whose hydrocephalus was the result of her suffering a massive stroke when she was born.
“They (doctors) told us she would never walk and she would never talk, and today she does everything,” Tom said.
Elyse came into the world about four months premature, weighing just over a pound. She spent 3 1/2 months in the hospital before Tom and wife Kim were able to bring her home.
It was only one month after that when Tom said Elyse grew especially fussy.
“She was crying but wouldn’t open her eyes,” Clough said. “When I got her to open them, I could only see the whites of her eyes.”
Tom would later learn that was a common symptom or sign of hydrocephalus caused by the build-up of fluid on top of the brain. Hydrocephalus is a condition in which an abnormal amount of cerebrospinal fluid accumulates in the brain’s ventricles. The excess fluid builds up and causes swelling on the brain because it is unable to drain on its own.
The father said Elyse was rushed to her pediatrician, who recognized the condition and advised the Cloughs to get her to Upstate Medical University Hospital in Syracuse right away. Hydrocephalus was the result of the child’s stroke and today the condition has caused her to suffer a seizure disorder as well. Sometimes Tom said he can only guess Elyse is about to suffer a seizure if she exhibits a lack of appetite, if her right eye drifts or if he moves his finger and she is unable to focus.
As for the child’s seizures, “It’s not a matter of if it will happen, it’s a matter of when,” the father said, which usually results in an emergency trip to the hospital.
There is no known cure for hydrocephalus and the only way it’s treated is for shunts to be surgically placed in the skull. Elyse has had to have multiple shunts replaced, Tom said.
“Every child” diagnosed “with hydrocephalus ends up with other problems,” the father said. His daughter has had a total of nine emergency brain surgeries.
That is why the Cloughs created the REaCH Organization, whose focus is to promote a better quality of life for children and adults with hydrocephalus through research and education, with the goal of one day finding a cure.
REaCH raises funds for conducting clinical, laboratory and transitional research in hydrocephalus and all its related disorders. Group members also work to educate communities and families of people affected by hydrocephalus and raise awareness about the disorder.
Facts about hydrocephalus:
• Symptoms of hydrocephalus include headache, nausea, vomiting, sensitivity to light, excessive sleepiness, “sun setting” of the eyes and seizures.
• There are 180 different disorders that lead to hydrocephalus. If left untreated, the condition can be deadly.
• Hydrocephalus affects people of any age, from newborns to the elderly.
• In the last 50 years, there has been no significant improvement of treatment or progress toward a cure.
• The only effective treatment is surgical.
• There are more than 40,000 shunt surgeries every year – That’s about one every 15 minutes.
• Shunts have a 50 percent failure rate within two years of being surgically implanted.
• Approximately 1 in 500 babies are born with hydrocephalus.
• It’s the most common reason for brain surgery in children.
Two years ago, Elyse, who was the Student of the Month for February at Westmoreland Elementary School, was named National Ambassador of Hydrocephalus Awareness by the Pediatric Hydrocephalus Foundation. She joined her parents and 23 other members of Research, Educate and Cure Hydrocephalus on Capitol Hill in Washington, D.C. to meet with lawmakers and advocate for research.
But that did not come without its own obstacles. Days before, Tom was checking in on son Nathan to say good night when he passed his daughter’s room and noticed her hand shaking. Knowing she was having a seizure, the Cloughs drove to Upstate, the closest hospital with specialists willing to see Elyse. She suffered the seizure at around 10:30 on a Friday evening and by 8:25 the next morning, she had undergone surgery for her seventh shunt. But Elyse was able to recover in time to make the trip.
While in D.C., the group was also able to visit with representatives of the National Institutes of Health, which is where they learned there are 10 studies being worked on toward finding a cure for hydrocephalus, but only one to help eliminate shunts as a method of treatment. Tom said that is a major concern because shunts have a 50 percent failure rate.
“In 2016, Elyse had to have two shunts in four days,” he said. “The whole idea for the research is to not have shunts anymore” and have a less invasive method of treatment.
There is also a neonatal study involving the diagnosis of hydrocephalus while a mother is still pregnant, Clough said.
To date, Tom said REaCH has raised about $54,000 to Update Medical for hydrocephalus research. Their organization was also given a grant that will result in another $10,000 to $20,000 being donated this year.
“We’re hoping we’ll produce even more funds,” Tom said. A benefit, Elyse’s REaCH for a Cure, is already being planned for Nov. 17 at Deerfield Fire Department. There will be food and up to about 100 gift baskets and other prizes being auctioned. Major sponsors have been Hannaford, Mealon Meats in Clark Mills, DJ Joe Load, Knucklehead’s in Westmoreland, Holland Farms in Yorkville, Hapanowicz Meat Market in New York Mills and Lukin’s in Utica.
Tom said he will also be auctioning off a guitar signed by John Legend and Lee Ann Womack.
“During the first year” of the benefit, “we raised $10,000, last year we raised $15,000 and the year in between, we raised $27,000 for research,” Tom said. “So we’re hoping to top that this year. Last year the Pediatric Hydrocephalus Foundation president even came up here for the benefit.”
In August the Cloughs plan to make another trip to D.C., but this time it will be to attend a national hydrocephalus conference with guest speakers. There is a bill that is calling for funding toward a national database for hydrocephalus that would result in more funding being earmarked for research, but Tom said the legislation has not yet made it out of committee.
Once it’s created, “Then we can request more money towards studies and research,” the father said.
For more information about REaCH and its mission, go to www.REaCH.org. The organization will accept monetary donations as well as prizes from local businesses to be auctioned at the November benefit.