Hydrocephalus is an incurable condition in which excessive spinal fluid gathers in the brain, placing potentially damaging pressure on tissues.

Jaden, who will be 2 on April 26, was the subject of a story in The Durango Herald on March 13, 2011, about his mother’s effort to form a support group for people with hydrocephalus. Jaden has a shunt in his head to drain spinal fluid.

Jaden will be the boy featured in promotions for National Hydrocephalus Awareness Month in September. Mackenzie Holcomb, an 11-year-old girl from Ohio, will be the featured girl.

“We’re happy to be part of this recognition,” Christina Brown said Friday. “It’s so cool.”

Jaden’s designation as the face of hydrocephalus carried a $500 stipend, which the family is going to donate to Children’s Hospital in Denver for research, Brown said.

Hydrocephalus occurs about once every 500 births.

The Pediatric Hydrocephalus Foundation is an all-volunteer nonprofit that works to raise awareness about the malady, promotes research and serves as an advocate for the hydrocephalus community.

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.

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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.

CHARLOTTE, N.C. — A routine ultrasound turned frightening for a local mom as she learned her baby would be born with a life-threatening condition.

Lindsey Musgrave remembers the day when she learned her son Vincent would soon have a sister.

“We were elated,” Lindsey said. “My husband wanted a girl. I wanted a girl. I just wanted a healthy child, though.”

That same ultrasound revealed something else.

“The doctor looked at me and he looked very concerned,” Lindsey recalled. “He said there was something wrong with her brain. It didn’t hit me at first. I was thinking it can’t be that serious right? And then he said, ‘No it’s really serious.’”

Her baby’s condition was so serious that the doctor told her to consider aborting the pregnancy.

“I asked them if she would ever be able to walk or talk, or ever be able to form relationships and the answer to those questions was, ‘I don’t know.’”

Lindsey also asked if the baby would be able to lead a normal life.

“They flat out told me no,” Lindsey said.

Marley was born with a severe case of hydrocephalus, which is excess fluid that puts dangerous pressure on the brain.

** Happy Birthday to the PHF!: This January, the Pediatric Hydrocephalus Foundation, Inc. celebrates the third year since our inception in 2009.**

Thanks to your generous support, the PHF celebrated many successes and accomplishments in the year 2011.

A PHF initiative at the end of 2010, 2011 started off with the formation in the U.S. Congress of the 1st ever Congressional Pediatric & Adult Hydrocephalus Caucus, founded by Congressman Leonard Lance of New Jersey & Congressman Tim Walz of Minnesota, which now stands at 20 members. For more information about the Hydrocephalus Caucus, please click here.

In a 12 month span, (December 2010 – December 2011), the PHF has awarded $70,000.00 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for Hydrocephalus Research & Education. For information on the PHF’s Grant & Donation program, please click here.

The PHF, an all-volunteer 501 (c) (3) dues free non-profit charitable organization, now boasts thousands of members across the Country, with 20 State Chapters, and more to come!

Last September, the PHF hosted the 1st ever Hydrocephalus Awareness Day on Capitol Hill in Washington, D.C., with over 25 speakers, and families from over 15 States participating. With the success of this visit, we will be hosting the next one in August of 2012.

Mackenzie Holcomb, 11 years old of Ohio, and Jaden Brown, 18 months old of Colorado, will serve as the PHF’s 2012 Ambassadors for our National Face of Hydrocephalus Awareness Campaign.

Jaden was born in April 2010, unknowingly as a healthy child with no known health issues at birth. Jaden’s head started to grow at a rapid rate around 4 month of age. My older son has a “large head” and has had an MRI to confirm that there is no medical condition. So at Jaden’s 4 month well check- we all didn’t think much of his “big head”. When his head continued to grow our doctor recommended he have an ultrasound which, then lead us to an MRI and neurosurgery consultation. Because of where we live in Southwest Colorado, we have to travel to Colorado Children’s Hospital for specialty treatment which is about 350 miles from where we live. During the first visit with Jaden’s Neurosurgeon, we learned about the large amount of extra-axial fluid on his brain and that Jaden had also suffered a stroke.

He has a large amount of brain damage affecting the left side of his brain and right side of his body. Jaden’s diagnosis is Hydrocephalus, infant Stroke, Cerebral Palsy and a vision condition called Cortical Vision Impairment. Jaden had his Shunt placed in 10-2010. Knock on wood his one and only shunt is working well and his MRI’s show a lot of improvement fluid wise. Jaden works hard with physical therapy, occupational therapy and speech therapy. He is little to no use of the right side of his body and is developmentally delayed. His movement is = to a 6 month old, and cognitive = to a 12 month old.