Hours after our so-called “perfect baby girl” was born, not only was she put to the test, but so was our idea of perfection. My husband and I were moments from dressing Sienna Dorothy in a pink velour onesie, tucking her in an infant car seat for the first time, and gingerly driving her home, when we were suddenly thrown a stinging curve ball.
Outside the womb for just a day, Sienna failed a test that nearly every infant passes. With tiny electrodes affixed to my sleeping daughter’s head, a screener at Sierra Vista Medical Center in San Luis Obispo watched a computer monitor for signs of brain wave response to sounds played in Sienna’s ear. My husband and I grew increasingly alarmed as this usually “quick, easy test” stretched to an hour, with still no expected result.
My postnatal joy over our precious and seemingly healthy 8 1/2-pound baby turned to fear and sadness. How could a deaf child dance with Daddy to his favorite music? Or sing along with Mommy at the piano? Would my hopes and dreams of a laughter- and language-filled home be suddenly and unexpectedly dashed?
Another screening administered eight days later produced the same daunting results. Reality set in: Our daughter was among the two per thousand American babies born each year with hearing loss.
Essentially all of the half-million babies born in California hospitals each year are given a hearing test before they’re discharged. In 2010, 1,188 infants and toddlers who were deaf or hard of hearing were referred to the state’s Early Start program for intervention services.
California’s Newborn Hearing Screening Program, mandated by a 1998 state law, requires acute care hospitals to offer a hearing test to all children born there. The first California hospital was certified to implement hearing screenings two years later. All hospitals in Santa Barbara County and San Luis Obispo County are approved and have been certified for many years.
Not every state has that requirement.
“Of course, I think the California program is a stellar program and that we are the jewel in the country’s crown for newborn hearing screening programs,” said Dr. Hallie Morrow, with the California Department of Health Care Services in Sacramento. “We’re the largest newborn screening program in the country. In fact, I think we’re the second largest in the world, second only to the United Kingdom, and our program is really pretty comprehensive when you compare it to what other states are able to do.”
California’s program includes unique hearing coordination centers overseeing almost every child with hearing loss in the state.
“If a baby needs follow up, the hospital has to arrange for that follow up prior to discharge,” Morrow said. “So a family leaves the hospital with an appointment, date, and time in hand, instead of a phone number to call.”
Early Start’s goal is to identify a hearing loss by one month, to have diagnosis by three months, and to fit children with hearing aids by six months, if needed. It’s called the “1-3-6 model,” and it allows a child to have the maximum auditory stimulation at an age when language is being developed.
“We don’t do a screening program just to see how many babies we can screen,” Morrow said. “The whole point of this is not to see how early we can catch hearing loss, it’s to prevent not having an exposure to language. That’s what this is really all about.”
As feared, our daughter was found to be profoundly deaf—meaning little or no hearing—in her left ear. But an audiologist follow-up confirmed something that changes her life significantly: She has good hearing in her right ear.
With early intervention, including speech therapy, our child should lead a normal life, with one ear compensating for the other. Now four years old, Sienna’s one hearing challenge is determining the origin of sound. She often looks right after hearing a sound coming from the left.
Her audiologist joked that Sienna would never be a big-rig truck driver or fighter jet pilot—professions that require better-than-average hearing. OK, we could live with that!
Through my experience, research, and talking with teachers, audiologists, and therapists, I have learned the No. 1 factor that determines a child’s success: family involvement.
Toni’s success story
Eighth-grader Antonia Rodriguez was born to an involved mom who would “move heaven and earth” to help her daughter. Well, at least move from Los Osos to Santa Maria.
Antonia was born 14 years ago in San Luis Obispo, before the newborn hearing screenings were widespread, and it took seven months for Antonia to be identified as deaf.
She had hearing aids by age 2 and went through cochlear implant surgery to attach the device behind one ear at age 3 1/2.
The implant produces useful hearing sensations by electrically stimulating nerves inside the inner ear, improving hearing and speech. The device is hidden by Antonia’s long, wavy, brown hair. People who first meet her are surprised to learn she’s deaf.
Antonia’s mom, Marixza Rodriguez, says it was a very difficult process. There were many obstacles for a Mexican-born woman, still learning English, living on a modest income, and trying to maneuver through America’s medical establishment for her daughter.
She had to travel to Oakland with her toddler for the cochlear implant, and they return there every year to have the implant “remapped”—or reprogrammed, setting electrical stimulation limits necessary for the user to perceive soft and comfortably loud sound. (Medi-Cal paid for Antonia’s cochlear implant and surgery, a price tag that today exceeds $40,000.)
Marixza remembered the first time the implant was turned on and her little girl’s reaction: “Her first noises, she was so scared. It’s something you have to see to believe. With running water, she’d get scared because it’s loud.”
Antonia recalled, “My mom told me that I cried and cried—so scared with the sounds.”
Eventually, Antonia learned to hear well with the implant, but speech came much later. Her mom waited years to hear that one precious word that was finally “music to her ears.”
“It wasn’t until she was about 7 that she started talking and said ‘Momma,’” Marixza said. “Oh my God, it’s like, I couldn’t believe I had to wait seven years to hear that, you know?”
It was about that time that Marixza made another important decision on behalf of her family: to move to Santa Maria to find a better educational environment for Antonia, who was about to start second grade.
“We tried [Los Osos], but I felt some discrimination there because she was the only [deaf student] in the whole school. She never socialized with other kids, and they made her repeat first grade because they said she wasn’t prepared to keep going,” Marixza said. “Someone told me in Santa Maria there were many deaf kids and there were special programs at the same school. So the only choice was for us to leave. So, if I have to move, I will do it, I don’t mind. Anything I can do, I will do.”
What they found was the Total Communication program at Ralph Dunlap Elementary School in Orcutt.
“So I could be near people like me,” Antonia explained. “They changed my whole life. Yeah, I learned my English. I learned how to talk there. It changed my whole life.”
The life-changing school
“Total Communication” means every mode of communication: American Sign Language (ASL) and voice. Whatever the child needs, the child gets.
The person keeping track of all the deaf and hard-of-hearing children in Santa Barbara County is Maureen Wallace, the county’s educational audiologist. She’s based at Dunlap School and serves 70 to 80 children from Carpinteria to Cuyama.
Thanks to the California Newborn Hearing Screening Program, children with hearing loss have been identified as infants over the last decade. That’s years earlier than before.
But not all children are found to be deaf in infancy. One boy in the program at Dunlap School was 4 years old, in another district, when a school nurse discovered he was deaf. He wasn’t born in the United States and wasn’t tested as a baby. He’s profoundly deaf and was just recently fitted with hearing aids. His mom is learning sign language, and the boy is doing well in school, but has lost a lot of time.
Dunlap School has two special classrooms for 15 students who are deaf, preschool through sixth grade. Each classroom is a colorful feast for the eyes, tapping into all the senses.
Most students are mainstreamed into some general education classes with sign language interpreters.
The gifted, animated teachers sign while talking, wearing microphones so their voices are amplified through speakers in the classroom, assisting those students with residual hearing. All the students learn sign language. Most have it mastered by fifth grade.
“We do a lot of language arts. Most of the kids who are deaf and hard of hearing have a really difficult time with language arts,” said teacher Kelly Sanders. “They’re not hearing the language like you and I do, so they don’t have that ingrained sense of English. So a lot of time is spent teaching English structure, reading, writing, but we also do the science and the social studies and math.”
Dual disability
One of Mrs. Sanders’ fifth graders is the only student of his kind in Santa Barbara County schools.
“Diego”—whose name was changed for this article at the request of his family—lived the first six years of his life in silence, without anyone knowing for sure that he was deaf. It wasn’t until he attended school in Santa Barbara County for the first time and an audiologist tested him that he was identified as deaf.
He was the fastest sign language learner his teachers at Dunlap had ever seen; he was so ready for any kind of language.
“But then, we noticed he started to squint and he couldn’t do the signs right and see,” Wallace said. “There are a couple syndromes that have both vision and hearing related to them. He might be on that route.”
“His vision loss is so profound that even with glasses he needs the up-close reader,” said Helen Rehm, Santa Barbara County’s special education coordinator.
So, knowing that “Diego” was deaf and also rapidly losing his sight, the county’s vision department brought in a special magnifying device for him, which trains a camera on his teacher while she signs.
In addition, he’s in mobility training for his situation, and someday will likely need to learn Braille.
Sign of the times
Not every child picks up a new language so fast, and not every family is willing to learn a new language. Wallace says the hardest cases are those in which the parents only speak Spanish and their deaf child’s only language is signing.
“We’ll have an [Individualized Education Program] sometimes with a sign language interpreter, Oaxacan translator, and Spanish translator,” Wallace said. “It’s pretty intriguing, actually. Yeah, for those kids, that’s a huge challenge.”
The deaf kids who will struggle the most in school and life have parents who don’t make the effort to communicate with them.
“It’s sad when you see some families when their children are extremely fluent in sign language, they’ve been in Total Communication since Kindergarten, their primary language is ASL, but their parents don’t sign,” Wallace said. “Now as a mother, and as a parent, can you only imagine that? I don’t know how you communicate with your child! Yeah, that’s really sad. It’s a small group of people, but even one just bothers me.”
Wallace added that sign language is one of the easiest languages to learn: “So, so easy. Kids pick it up fast.”
Parents who have a child enrolled in the deaf program at Dunlap School are offered free sign language classes during the day or in the evening, for the family’s convenience.
Parents of infants and toddlers can also take a parent class or have individual family sign support, and there are signing videos available for families of older children. Many families take the sign language classes offered to the public at Allan Hancock College, for which scholarships are available.
“If they have signing parents, their sign language will be on par with the language of a hearing child,” Wallace said. “But if they have parents who don’t sign or don’t speak English … the child will be behind. [It] makes a huge difference.”
Beginning the journey
Mexican immigrant parents Jose Lazaro Ruiz, age 23, and Bibiana Ruiz, 25, are just starting down the path of learning English and sign language. Their two-year old son, Angel, is profoundly deaf, which was discovered during the newborn hearing screening at Marian Medical Center when he was born.
The couple came to California three years ago in search of a better life, and settled in Santa Maria where they work in the fields 10 hours a day, six days a week.
Angel, who wears hearing aids to amplify sounds, attends Early Start classes for the deaf twice a week to be exposed to sign language. Once a week, an educator for the deaf visits their home to work with the family on communication.
His teacher, Kim Stewart, says Angel is a happy, sweet boy who’s doing well in school.
“He comes and plays and enjoys music time,” Stewart said. “It’s a neat thing to watch. He really enjoys the classroom.”
Angel’s form of communication will be sign language and some vocalization. His parents are afraid of the possible complications of cochlear implant surgery and probably won’t take that route for Angel.
Through an interpreter, Bibiana agreed that the last two years have been hard. Learning English is difficult, she said. And for a time, she blamed herself for her son’s disability.
“From the beginning it was difficult because I asked myself, was it my fault? Was it my husband’s fault? But now that I’m seeing that nothing is really wrong with [Angel] and he has all the help he needs, I feel that he’ll have everything he needs in his life.”
California Children’s Services pays for Angel’s digital hearing aids, which run several thousand dollars. The molds are changed every three months, because the ear grows.
Jose’s dream for his boy is “that one day, he will hear just a little bit, and hopefully he can talk one day.”
“We’re gonna love our child, no matter if he can hear or not,” Bibiana added.
Parental involvement, early intervention, exposure to language, and making friends in the closely-knit deaf community are a few keys to success.
Antonia’s mom Marixza is another parent who sacrificed and fought for her daughter, whom she considers a gift: “It’s your kid, [she’s] part of you, and if God sends you a kid that way, it has to be for a reason.”
Dr. Morrow added, “The important thing for families to know is they still have a beautiful, perfect baby that is the same baby they brought home from the hospital, and it’s a baby that they can still communicate with and they can respond and have a wonderful relationship with. They just have to learn how to do that.”
Wendy Thies Sell is the Sun’s regular food and wine writer. Contact her at wthies@santamariasun.com.
This article appears in Jan 19-26, 2012.