Tremaine’s son, Christian, now 14, had the same surgery not long after he was born. For Tremaine, the meeting with the couple last year was a chance to offer encouragement to those in a position she had experienced more than a decade earlier.

“It was just really overwhelming,” Tremaine said, recalling the early days of Christian’s diagnosis. The thought that got her through the surgery and the five months Christian spent at Kapiolani was to “do this one thing at a time.”

That’s a message she wants to share with other parents, especially those living on Hawaii Island. A resident of Waikoloa and employee at Waikoloa Elementary and Middle School, Tremaine knows of just two other children on the island who have been diagnosed with the condition. But with more than 1 million people across the country believed to have the condition, which occurs when the brain is unable to absorb cerebrospinal fluid, Tremaine said she believes more island residents could have the incurable, lifelong condition.

According to the Pediatric Hydrocephalus Foundation, as the cerebrospinal fluid accumulates, it widens brain spaces known as ventricles. That widening creates potentially harmful pressure on brain tissue, the foundation’s website, hydrocephaluskids.org, said. Hydrocephalus can be congenital, meaning an infant is born with it, or be the result of a traumatic brain injury.

Tremaine and her sister, Shaula Tualaulelei, want to be able to connect with other families here who deal with hydrocephalus, as well as continue to raise money for hydrocephalus research and awareness. Through the foundation, the family participated in a fundraiser last year that provided donations to Kapiolani, as well as $1,000 to Kona Community Hospital, for a neonatal resuscitation training program.

Christian was born at Kona Community Hospital in January 1999, via an emergency Cesarean section when Tremaine was about six months pregnant. He was rushed to Kapiolani, while Tremaine remained in Kona as she recovered from the surgery and a subsequent infection. About two weeks after he was born, doctors at Kapiolani called to tell her Christian had suffered from a brain bleed, something they described as similar to a stroke.

They wanted her permission to operate and place a shunt — a plastic tube placed in the brain or just outside the spinal cord — to drain the excess fluid to his abdomen, where it would be absorbed. She said yes, and headed to Oahu the next day.

“We didn’t know what to expect,” Tualaulelei said.

Christian, who weighed only 2 pounds, 12 ounces at birth, remained small for years, Tremaine said. When he was 2, he looked like he was maybe half that old. She needed to learn how to care for an infant with special needs and doctors warned her he might also have cerebral palsy. A state early childhood development therapist made home visits, working on his fine and gross motor skills.

Tremaine took him to the beach, where he gained strength enough to surprise his doctors.

“He started walking, talking,” Tremaine said, adding Christian met the milestones, even if they were delayed.

The first two years of his life, he was medevaced to Oahu “a lot of times,” but in the years since, until last year, he remained fairly healthy. Last February, Tremaine noticed her son seemed not to feel well, although he claimed he was fine.

They went to North Hawaii Community Hospital, where doctors discovered four tears in his shunt tubing, probably the result of years of use. They went to Oahu to visit the sole neurosurgeon in the state and Christian underwent surgery. A week later, recovering at home, he began vomiting. Tremaine took his temperature and discovered he had a 103 degree fever. They headed back to North Hawaii Community Hospital, where he was medevaced again. This time, though, the neurosurgeon was out of the country.

Their only option, Tremaine said doctors told her, was to ask military officials if Tripler Medical Center would admit and treat him. The military hospital agreed to do so. By the time he reached Tripler, his fever was nearing 107 degrees. Several surgeries — including one to install an external shunt to hold him over until his neurosurgeon returned — and several months later, Tremaine was finally able to return to the Big Island.

Through it all, it was her son’s positive outlook that helped Tremaine hold herself together.

“It was hard,” Tremaine said. “He’s strong. I was about to lose it. I was about to cry. He’d look at me and say, ‘Mom, I’ve been through so much. What’s one more?’ He’s always smiling.”

Christian, a quiet young man, said the situation — the shunts, the surgeries, the reminders to be careful and avoid full-contact sports — is just his normal life. His school principal, Kris Cosa-Correira, described him as a great kid.

“He’s awesome,” she said. “He hated staying home. He’s very well liked, very popular. He doesn’t have an enemy in the world.”

Last year’s extended hospital stay, during which Tualaulelei cared for Tremaine’s 15-year-old daughter, prompted Tualaulelei to learn more about hydrocephalus. She found the Pediatric Hydrocephalus Foundation, contacted the organization and got support from them.

“You really need to hear those encouraging words,” Tualaulelei said. “That’s what the foundation brings, support.”

The foundation’s ultimate goal is to raise money for hydrocephalus research, in hopes of finding a cure.

Foundation officials, noting a limited presence in Hawaii, named Tualaulelei one of two state directors. Already, her involvement has helped her meet other people on Hawaii Island dealing with a hydrocephalus diagnosis in their family.

“We knew we had to reach out,” Tualaulelei said. “This allows other families to know, here’s a network of families.”

“Her head measurement was way off,” said Elmore, a single mother from Gosport whose firstborn is a healthy 2-year-old son. “I was very concerned.”

Further testing at two Indianapolis hospitals revealed that her baby, Aila, had hydrocephalus — an incurable condition that causes excessive fluid to collect in the brain, abnormally enlarging the head and placing potentially fatal pressure on brain tissues. The disorder affects about 1 in every 500 births.

When Aila was born four months ago, her head circumference was 46 centimeters, about 11 centimeters larger than normal for a full-term newborn. At the Riley Hospital for Children at IU Health, doctors placed a shunt into her skull just above her temple to drain fluid from her brain into a tube that empties into her abdomen.

But the shunt does not drain all the excess fluid because Aila is missing most of her cerebral cortex, a sheet of neural tissue in the brain that plays a key role in memory, attention, perceptual awareness, thought, language and consciousness.

“If they drained all the fluid, her brain would collapse and she would probably die,” Elmore told The Herald-Times (http://bit.ly/XQB5wv ). “So the shunt is used to keep her fluid level stable and prevent the pressure on her brain from becoming dangerous. She will need the shunt for the rest of her life.”

Elmore said it’s too early to know the long-term effects of Aila’s condition, which can cause such things as learning disabilities, memory problems, motor skill disabilities, seizures and hearing or vision problems.

“The doctors can’t say whether she will be able to walk or talk,” she said. “But so far, she is eating and breathing on her own. My hope is that she will be able to have a life as full and productive as humanly possible.”

During her pregnancy with Aila and after her daughter’s birth, Elmore received a wealth of support from not only from her mother and other family members, but also from the Pediatric Hydrocephalus Foundation, a nonprofit organization with 30 state chapters that funds research and provides support to families, friends and children affected by the disorder.

“The foundation helped me know what questions to ask the doctors,” Elmore said. “There are times when I got overwhelmed, and the people at the foundation calmed me down and explained things to me or told me where I could find the information I wanted.”

So when Elmore learned the director of the Pediatric Hydrocephalus Foundation’s Indiana chapter had stepped down, she volunteered to fill the position.

“I didn’t want any family to face hydrocephalus alone,” said Elmore, who answers to a board of directors. “I wanted to make sure the state chapter would be there so they could get the same kind of help and support that I received.”

Since assuming the directorship in November, Elmore has placed educational pamphlets about hydrocephalus in pediatricians’ offices, made efforts to form family support groups, and put information about the state organization on Facebook.

“I also hope to have two local fundraisers within the next year that will include all the kids and their families,” she said.

Elmore was recently delighted to learn that the national Pediatric Hydrocephalus Foundation has selected Aila and a young boy to be the 2013 faces of the organization. The two infants, along with their stories, will be printed in pamphlets that will be mailed to U.S. congressional representatives and used in other educational outreach efforts.

“The foundation is hoping their story will inspire families to realize that just because your child has hydrocephalus, it doesn’t mean your child’s life is over,” she said.

The Pediatric Hydrocephalus Foundation raises awareness about the disorder and raises money for research on treatment options and, hopefully, a cure. The foundation also advocates on behalf of members by asking state and federal legislators to push for more research and support in the fight against hydrocephalus.

One of the many ways PHF raised awareness about Hydrocephalus in 2012 was through outreach. Speaking to people whenever the opportunity presented itself, whether informally or formally, helps the cause.

Last year, the PHF was able to reach out to a whole new community in New Jersey by speaking to numerous Freemason organizations across the State of New Jersey.

One of the members of the Freemason Society happens to be a Dad to a teenager with Hydrocephalus. Freddy Stein also serves as the Event Coordinator for the PHF in New Jersey.

Thanks to that connection, we were able to educate hundreds of people about Hydrocephalus and we were fortunate enough to be the recipient of many generous donations.

As we celebrate the beginning of a New Year, we also celebrate the Birthday of the Pediatric Hydrocephalus Foundation.

Four years ago on January 9th, our dream became a reality. The Pediatric Hydrocephalus Foundation, Inc. was officially “open for business.”

Thanks to your generous and continued support the PHF celebrated many successes and accomplishments in the year 2012.

We started off 2012 by launching a new initiative called PHF “Families First for Hydrocephalus.” This program introduced the PHF into hospitals around the Country and to families dealing with Hydrocephalus.

The PHF returned to Our Nation’s Capital in August for the 2nd Annual PHF Hydrocephalus Awareness Day on Capitol Hill. With over 70 attendees, representing 25 families and 14 States, the PHF met with the offices of over 40 Members of Congress to advocate, educate & raise awareness.

By the end of the day, it looked like everyone on Capitol Hill was wearing the PHF’s signature Hydrocephalus Awareness solid Light Blue bracelet or lapel pin!!

For September’s National Hydrocephalus Awareness Month, the PHF introduced “Hydrocephalus Sibling Appreciation Day”, Siblings from 10 families were randomly chosen and were awarded a Family Night at the Movies, courtesy of the PHF, Inc.

In 2012, the PHF has awarded over $110,000.00 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for Hydrocephalus Research & Education:

CHOC Foundation
Goodman Campbell Brain & Spine Foundation
Cameron Can Foundation
St. Cloud Hospital
Boston Children’s Hospital
Children’s Hospital Colorado
Yale-New Haven Children’s Hospital
Akron Children’s Hospital
Duke University Medical Center
Kapi’olani Medical Center for Women and Children
Kona Community Hospital
Nationwide Children’s Hospital
Albert Einstein College of Medicine
University of Utah
University of Illinois at Chicago

The PHF, an all-volunteer 501 (c) (3) dues free non-profit charitable organization, now boasts thousands of members across the Country, with over 30 State Chapters, and more to come!

Aila Elmore, 5 months old of Indiana, and Matthew Elicea, 9 years old of California, will serve as the PHF’s 2013 Ambassadors for our “National Face of Hydrocephalus Awareness” Campaign, as we head towards the 5th Anniversary of Hydrocephalus Awareness Month in September.