By Jamye Durrance

Staff writer

NEW SMYRNA BEACH - Three years ago, Terri Lynn Ellis Brearey was cradling her infant son Trenten when she felt him stop breathing.

"It was the most eerie feeling," she said.

Trenten started breathing again after a few seconds but then he stopped again.

Ms. Brearey immediately went next door to her brother Kevin, who was a nurse.

A doctor's visit ruled it reflux and ordered that Trenten sleep at an incline.

But the episodes continued, each time lasting a few seconds longer than before.

Ms. Brearey knew something was more seriously wrong and took Trenten to the doctor again.

"I can't wait," she said. "I won't make it through another night. I'll lose this baby."

Trenten was admitted to Arnold Palmer Hospital for Children in Orlando and put in ICU.

During one night, he stopped breathing 300 times.

"The doctors were baffled," Ms. Brearey said. "They couldn't believe he was bringing himself out of these episodes."

Doctors from Nemours Children's Hospital and Arnold Palmer finally diagnosed Trenten with infant sleep apnea.

Sleep apnea, typically associated with adult males, causes a person to stop breathing while sleeping. There are three types of sleep apnea: obstructive, central and mixed.

Obstructive sleep apnea is caused when something blocks the airway, usually tissue in the throat. With central sleep apnea, the brain fails to signal the muscles to breathe. Mixed sleep apnea is a combination of both.

According to the National Institutes of Health, sleep apnea affects 12 million Americans but is treatable.

Untreated, sleep apnea can cause high blood pressure, weight gain, memory problems and headaches.

But, for infants, sleep apnea is often not caught and commonly misdiagnosed.

Dr. Ian Nathanson, a pediatric pulmonologist with Nemours Children Clinic, said SIDS, or sudden infant death syndrome, and infant sleep apnea often get lumped together when, in actuality, the percentage of cases in which they are related is small.

"SIDS is a different kettle of fish," he said. "But, because of the diagnostic coding, there is some overlapping."

More research needs to be done on both SIDS and infant sleep apnea before any true connections can be known, he said.

As for Trenten, he was lucky.

"He's a fighter," Ms. Brearey said.

Today, Trenten is a happy and healthy three-year-old. With the aid of medication and an air machines, doctors believe he will grow out of his apnea but he will always be closely monitored.

"I always check on him," Ms. Brearey said. "I still put my hand on his chest at night."

The lack of information about infant sleep apnea is what pushed Ms. Brearey to start the Infant and Children Sleep Apnea Awareness Foundation earlier this year.

"It took two and half years to come to terms that I almost lost him," she said. "There needs to be a foundation for awareness."

Part of that awareness includes pushing for more research.

Currently, Ms. Brearey is working with several doctors throughout the country to get more research going.

But, first Ms. Brearey has to raise funds for research.

On Oct. 4, the foundation is sponsoring a charity golf tournament at Crane Lakes Country Club in Port Orange.

Organizing fundraisers is tough, especially when the foundation is just getting off the ground, Ms. Brearey said.

"It's a big endeavor," she said. "It's a challenge, but I'm up for it."

Awareness remains Ms. Brearey's biggest calling, as evidenced by the foundation's slogan: "Awareness can save a life."

Ms. Brearey is advocating the use of apnea monitors, which go underneath crib mattresses.

"One of the biggest things I'm pushing for is one in every daycare," she said.

Ms. Brearey's ultimate goal is for every new parent to know the signs of infant sleep apnea so they can seek treatment before it's too late.

"I'm not going to give up," she said. "Awareness can save a life and that's the biggest thing."

Dr. Nathanson said parents play a crucial role in getting a correct diagnosis for infant sleep apnea.

"Their observations are the most critical," he said. "They provide the information to the physicians."

Dr. Nathanson said parents need to tell their doctors everything, from the color of the infant's skin to how long and what time the episodes occur.

Patients are often misdiagnosed with infant sleep apnea because there is not enough information, Dr. Nathanson said.

Ms. Brearey said she encourages parents to communicate with their pediatricians.

"I'm just a mom who has been through it," she said. "I'm not a doctor. Make sure you call the pediatrician because waiting could be too long."

Even with her passion about awareness, Ms. Brearey said she knows how lucky she is.

"If Trenten wasn't here, it would be very hard to swallow," she said. "God obviously had a path for me. I really think this is the path I was supposed to take."

To find out more, visit infantsleepapnea.org.

To register for the charity golf tournament, contact (386) 423-5430.