Rep. James Langevin & Rep. David Cicilline Join Hydrocephalus Caucus

Murphy Joins Hydrocephalus Caucus

Hydrocephalus is a neurological condition caused by abnormal buildup of cerebrospinal fluids (CSF) in the ventricles of the brain. The condition can occur at any age, affects an estimated one million Americans, and in some cases, can cause death. One out of every 500 babies is born with hydrocephalus in the US, and is the leading cause of brain injury in children. Instances of hydrocephalus are also being found in an increasing number of veterans who develop the condition as a result of brain injuries suffered on the battlefield. Unfortunately, there is no known single cause of hydrocephalus and there have not been significant advancements for treatment over the last fifty years.

Jenna Sciulli, a resident of Chartiers Township in Washington County, has been working to raise awareness about the issue both locally and nationally. Sciulli, who serves as Pennsylvania State Director of the Pediatric Hydrocephalus Foundation (PHF) recently visited Rep. Murphy’s office to discuss the challenges facing parents of children with this condition. She knows first-hand what it’s like because her five-year-old son has hydrocephalus and must attend speech and physical therapy every week.

“I commend Mrs. Sciulli for her tireless efforts to educate lawmakers and the public about this healthcare issue,” said Congressman Murphy, who serves as co-chair of the Doctors Caucus in the House. “Thanks to her dedication, I am joining the Congressional Hydrocephalus Caucus to help inform members of Congress about important research into hydrocephalus diagnosis and treatment, so we may save lives and one day find a cure.”

As Dante Sciulli ran through the family’s backyard toward the swing set, his mother, Jenna, encouraged her son’s independence and marveled at the 4-year-old’s exuberance.

A few months ago, she probably would have been a bit more protective – and nervous.

But after undergoing his third brain surgery in October to relieve symptoms from hydrocephalus, the Chartiers Township youngster is doing very well, and his strength, stamina and muscle tone continuing to improve, thanks to twice-weekly physical therapy sessions at the Children’s Therapy Center in Peters Township and Washington.

He not only is an inspiration to his mom and dad, David, and his siblings, Luca, 10, and Elena, 8, but also the millions who are living with the condition.

It’s also why Jenna now serves as the volunteer director of the Pennsylvania Chapter of Pediatric Hydrocephalus Foundation Inc., one of 21 state chapters throughout the United States.

When Dante was diagnosed with hydrocephalus, there were no local support groups where Jenna and her husband could obtain educational and emotional support. For a while, they participated in a support group in Cleveland.

“Dante is doing so well and I have the time,” Jenna said. “After talking with other parents, I took the role because I felt like I could. I wanted to be there for other parents.”

And the foundation is starting to pick up momentum, she said.

Jenna became the volunteer director last summer. Since then, the state PHF chapter has held several fundraisers and awareness events, and has donated money to Children’s Hospital of UPMC Department of Neurosurgery, National Research Foundation and family outreach. It also has partnered with Project Linus to provide blankets in goodie bags for patients at Children’s Hospital in Pittsburgh and Ruby Memorial Hospital in Morgantown, W.Va.

Hydrocephalus is a buildup of cerebrospinal fluid inside the skull that leads to brain swelling. The fluid surrounds the brain and spinal cord, and helps cushion the brain. CSF normally moves through the brain and the spinal cord, and is soaked into the bloodstream. CSF levels in the brain can rise if:

n Its flow is blocked;

n It does not get absorbed into the blood properly;

n The brain produces too much of it.

Too much CSF puts pressure on the brain, pushing it against the skull and damaging brain tissue. One in 500 newborns is diagnosed with hydrocephalus each year in the United States, and, according to Jenna, it’s the No. 1 reason for pediatric brain surgery in the country.

There are two forms of hydrocephalus: congenital and acquired.

Congenital hydrocephalus begins in the womb. It is common in babies who have a birth defect in which the spinal column does not close properly.

“A lot of times, it’s secondary to something else,” said Jenna, noting that those with congenital hydrocephalus often incur more setbacks and have more physical and mental disabilities.

Dante has acquired hydrocephalus.

When Dante was born in June 2007, he spiked a fever and spent several days in the neonatal intensive care unit. Even though nobody suspected hydrocephalus, when Dante was discharged from the hospital, the Sciullis were told to keep an eye on him.

It wasn’t until Dante’s head began to bulge in a matter of days that the couple realized something was wrong. He was 3 months old.

Dante had a CAT scan and MRI, which revealed a brain cyst. Jenna said the cyst probably developed before he was born.

Since learning about the condition, Jenna said in hindsight, Dante probably was experiencing symptoms for at least a month. For instance, Dante did nothing but fuss when the family was driving through the mountains during their vacation to the beach as the pressure on his brain increased with the change in altitude.

“But a medical problem wasn’t expected,” she said.

In infants with hydrocephalus, early symptoms also may include eyes that appear to gaze downward, irritability, seizures, sleepiness and vomiting.

Following his diagnosis, Dante had surgery to excise the cyst. A few weeks after that, a shunt was implanted to relieve the pressure in his brain.

At the time, the family lived in Wexford, where Dante’s pediatrician immediately prescribed physical therapy. “Dante had to learn to hold up his head again,” Jenna said.

He has taken physical therapy twice a week ever since to improve his muscle tone and increase his strength.

In October, Dante underwent his third surgery, this time to replace the shunt. The surgery involved three small incisions so doctors could thread the tubing from the shunt at the top of his head to behind his ear, through the chest cavity and into his stomach.

Jenna said the tubing uncoils, and it is long enough that Dante could grow to 6 feet tall and it won’t present a problem.

Dante’s shunt also is magnetically programmable, so if adjustments need to be made, they can be done electronically at the hospital. As a result, he must avoid contact with extremely strong magnetic fields, and he is unable to participate in contact sports.

In August, the Sciulli family will attend National Hydrocephalus Awareness Day on Capitol Hill, where they will meet with U.S. congressmen. Dante also may get to meet a few friends with hydrocephalus who he has met online.

“It will be good, too, for the other kids to see siblings of children with hydrocephalus,” Jenna said.

For more information, become friends with Pennsylvania Pediatric Hydrocephalus Foundation Inc., on Facebook, or visit www.hydrocephaluskids.org.

Infobox:

Pediatric Hydrocephalus Foundation Inc., Pennsylvania Chapter, is holding a fundraiser through April at Beechie’s Place, 400 W. Pike St., Meadow Lands. Hydrocephalus ribbons can be purchased, and a percentage of all kids’ meals will benefit the state PHF chapter.