As part of the PHF’s Hydrocephalus Awareness Over America (HAOA) campaign, today, Saturday, September 21st is the 1st ever Hydrocephalus Awareness Day in Hawaii!!

Congratulations to PHF State Chapter Director’s Shaula Tualaulelei & Amanda Klebe in getting this done, and to Governor Abercrombie for his participation:

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.”