BY JORGE BARRIENTOS, Californian staff writer firstname.lastname@example.org
Olivia Corinne Hoff had a good heart, her family and friends share.
It was a heart that led her to befriend the new girl in school who ate alone during lunch and the disabled student others made fun of. It was a heart that said "I love you" at just the right time.
WARNING SIGNS/SYMPTOMS OF SUDDEN CARDIAC ARREST
* Family history of unexpected, unexplained sudden death in people younger than 40, including sudden drowning and single car accidents
* Fainting or seizures during or right after exercise
* Consistent or unusual chest pain or shortness of breath during exercise
LONG QT SYNDROME
* LQTS is a disturbance of the heart's electrical system, causing an abnormality of the heartbeat or heart rhythm.
* Because of this abnormality, affected people are vulnerable to sudden fainting and even death.
* Many times the fainting is overlooked and the events are called simple fainting spells or seizures.
* Most often these events occur during physical exertion or emotional stress. In some they occur during sleep.
* Most of these deaths are preventable if the condition is recognized and treated.
For more information, and for a "risk assessment form," go to www.sads.org.
Source: Parent Heart Watch and Sudden Arrhythmia Death Syndromes Foundation
That heart, however, gave out suddenly six years ago -- at age 14. Olivia died in her sleep of sudden cardiac arrest.
Like many victims, Olivia and her family knew nothing about Long QT Syndrome, a heart disorder that silently kills thousands nationwide every year.
Olivia's death, her mother, Corinne Ruiz argues, could have been prevented with proper education, evaluations and emergency safety measures.
So she's on a mission: inform as many people as possible about heart syndromes affecting kids, and make sure schools have Automatic External Defibrillators -- a device that helps increase chances of survival during sudden cardiac arrest.
"How many kids in this city have what Olivia had, and don't know it?" Ruiz asked. "Olivia didn't have to die. It has taken me six years to find my way back and not let my daughter's death be in vain."
At Rosedale Middle School, Olivia was active. She was cheerleader, loved to run and play basketball and never showed signs of health problems, Ruiz said.
But one day after physical education, she felt faint. Another time, she ran out of her bedroom, scared, saying her chest hurt. Then she got severe headaches and neck pain.
When Olivia was a freshman at Liberty High School, a doctor evaluated her and said she was stressed. Ruiz told her daughter to slow down a bit.
"I was angry I didn't request an (electrocardiography) to check the heart and detect an abnormality, Ruiz said. "But we didn't know."
A few weeks later, on Easter Sunday, Olivia seemed fine. In fact, Ruiz said, Olivia was extra caring and "very attached, like if she was a little girl again." After time at the park, Olivia left for a friend's house and said her last words to her mother: "I love you."
Morning came and Ruiz called to her daughter to wake up for school. No response came.
"I knew there was something wrong," Ruiz said. "I went to her and moved her, and there was no reaction. She had no heartbeat. I started screaming."
Olivia's big brother, Manuel, called 911 while Ruiz tried to stay calm.
After working on Olivia for an hour, emergency responders and doctors got her heart started again, but she was comatose. On the 10th day of no signs of life, Olivia's family decided to take her off life support.
"We donated her organs. Her corneas gave sight to two people," Ruiz said. "Her heart valve gave life to a boy. She lives on to this day."
Her funeral was standing-room only.
"She had a beautiful heart," said Xavier Ruiz, her stepfather. "A weak one, but a beautiful heart."
Kristin Clifford and Olivia became best friends after Olivia befriended the new girl in school. She called Olivia spontaneous, caring and considerate of everyone else. Olivia, like Clifford is, would be 21 today.
Every year, about 400,000 Americans die suddenly from cardiac arrhythmias, or abnormal heart rhythms. About 4,000 of those are younger than 35. Long QT Syndrome is three times more common in the United States than childhood leukemia, according to Sudden Arrhythmia Death Syndrome Foundation.
The symptoms many times are misdiagnosed as asthma or epilepsy without any cardiac evaluation. Olivia's doctor merely prescribed antihistamine, which the doctor gave for cold symptoms, Ruiz said.
After Olivia's death, Ruiz was "numb" the first few years, then became angry. Why did Olivia have to die? Why didn't she catch that something else was wrong?
A few years later she started healing: growing a garden because "Olivia said she always wanted to grow one," and growing a stronger relationship with God, she said.
Then Ruiz started researching Olivia's death and finding other parents across the country with similar stories: young children were dying of heart problems because no one identified the symptoms. She found information on heart conditions in youth was not out in public.
Soon she joined national groups, made contacts with local and state officials and became an advocate for cardiac awareness. She was "adopted" into the Sudden Cardiac Arrest Association, Sacramento chapter (Kern doesn't have a chapter).
Mark Storace, the Sacramento chapter president, said Ruiz's experience is like many others': learning about cardiac conditions after it's too late. It's important for people like Ruiz to get the word out, he said.
Storace suffered cardiac arrest while running a treadmill without warning. He survived, he said, because a defibrillator was available.
The chances of survival after a cardiac arrest, he said, increase by 25 percent with CPR and defibrillator use. Data from heart associations state the same.
Ruiz also connected with Jackie Perry Renfrow, Indiana chapter president. Renfrow lost both her children suddenly, a son and daughter, to cardiac arrest -- at ages 21 and 22.
She understands what Ruiz went through.
"You don't want your child to die for no reason," Renfrow said.
Little by little, Ruiz's mission has become what it is now: to get schools -- where kids spend most of their time -- up to date on sudden cardiac arrest awareness.
She's handed out posters for warning signs and symptoms. One hangs at Liberty High.
But equally important to her, she's trying to get defibrillators, or AEDs, in schools throughout Kern County.
As far as local experts and school officials know, no Kern County districts have AEDs on campuses. Bakersfield College has five in campus cars and six in "high traffic areas." Cal State Bakersfield has at least four in police cars and around campus.
The two largest districts here -- Bakersfield City School District and Kern High School District, with a combined student population of more than 63,000 students -- don't have any.
One, they don't have to. Unlike 12 other states, California does not require AEDs in schools. They are, however, mandatory in health clubs. Two, schools dealing with unprecedented budget cuts say they cannot afford to spend up to $2,000 on each AED.
And third, many school officials including locally have said they're worried about the liability AEDs could cause. That frustrates Ruiz.
Under state law, anyone who uses an AED "in good faith in an emergency will not be liable for any civil damages."
"People need to stop thinking about liability issues," Ruiz said. "It's a bigger liability not having them on campus. These are children's lives."
KHSD requires an ambulance, with an AED, to stand by at all football games. Several school districts in California, however, require AEDs on at least some campuses.
That's the case in nearby Visalia Unified School District, which has AEDs in all four middle and four high schools, theaters and stadiums.
A committee of rotary club, hospital and fire officials raised money to buy them for schools, said district nurse Lucinda Mejdell-Awbrey. All district coaches, PE teachers and administrators must be trained, by law, to use them, which takes just a few hours.
"More and more ... you see AED in public locations. It's becoming the standard of care," Mejdell-Awbrey said. "The schools need the support of the community to be able to make them work in schools."
Local schools at first were not responsive to Ruiz's request, she said. They essentially said, "Thanks, but no thanks."
It's something Laura Friend, co-founder of Parent Heart Watch, is used to hearing. Friend's 12-year old daughter died of sudden cardiac arrest in 2004.
"Schools can build football stadiums and buy equipment, but not AEDs?" Friend said. "It just doesn't make sense. We lose a lot of children."
But local health and city officials are anything but resistant. In fact, several school nurses contacted for this report supported AEDs on campuses, but understood the financial constraints districts face.
Hall Ambulance Service for years has advocated for placement of AEDs, said John Surface, operations manager. It has donated to local fire departments and senior centers.
"Early defibrillation is a key to survival during sudden cardiac arrest," Surface said. "There is no doubt they save lives."
He added: "They're expensive for schools, I'm sure. But if you save one life, it would make sense."
Ruiz asked, and Storace in the Sacramento chapter and Hall ambulance delivered. Storace offered to donate an AED to a school and Hall promised to train. But which school would jump on board?
BECOMING A REALITY
Ruiz called Rosedale Middle School and reached one of the district's nurses, Josette McCrary. McCrary, who "thought this would be a good idea," relayed Ruiz's request to the district, which researched the potential cost and liability issues.
"There wasn't any concern as far as we could tell," said Tom Ewing, Rosedale's business head.
The school board jumped on board in June.
"It's an honor (Ruiz) thought about donating to the school especially in memory of her daughter," said Superintendent John Mendiburu.
On Aug. 23, Rosedale Middle will be possibly the first school in Bakersfield to have an AED on campus. Bakersfield City Councilman David Couch, Hall ambulance officials and other representatives will attend the presentation.
"To me this is a step in the right direction," Ruiz said, standing outside her daughter's room. The room, painted purple, has been largely untouched since Olivia's passing in 2004. Ruiz left the trash in her bin for about four years. "My dream is to raise awareness and fundraise AEDs for all of our schools."
She added through tears: "Olivia is the type of person who always wanted to help. She's my voice, my strength. My dream is becoming a reality."