Every mother dreams of the day her baby is born, all sweet and beautiful and new. When the battery of simple, routine exams begins, she never really believes that the tests will show anything less than absolute perfection.
When little Oliver Wolff’s initial hearing tests showed a problem, Shannon and her husband Tad could have easily dismissed the suggested follow-up appointment with an audiologist.
“The thought was that it could have been a little fluid in the ears, so we didn’t get a real sense of urgency [from the hospital] for that first appointment,” Shannon says, adding that she and her husband are not the kinds of parents to take such a thing lightly.
The results of the newborn hearing screening were shocking.
In what Shannon describes as a “day of total devastation,” the Wolffs discovered that baby Oliver was characterized as severely to profoundly deaf.
The diagnosis may have come as a blow to the Wolffs, but there was little time for hand-wringing and tears, though Shannon admits to shedding her fair share. The Wolffs sprung into action, scouring the Internet for answers, researching and reading, talking with professionals and educating themselves on the best course of action. They learned they had to move quickly.
According to the National Institute on Deafness and Other Communication Disorders, “Children begin learning speech and language in the first six months of life. Research suggests that those who have hearing impairment and get intervention have better language skills than those who don’t. The earlier you know about deafness or hearing loss, the sooner you can make sure your child benefits from strategies that will help him or her learn to communicate.”
Shannon adds, “We are very lucky that Oliver was born in a hospital that offered newborn hearing screening. The early diagnosis was such a blessing.”
A Race Against Time
At a time when most new families are adjusting to nursing schedules and crying jags, the Wolffs had embarked on a journey to bring sound to their son.
“Time is critical, because you need to expose your child to sound as soon as possible. We learned that from birth to 1½ years, there is a huge window of opportunity where a newborn requires access to sound. Once that time has passed, positive outcomes (for hearing and speech) start to drop off,” Shannon says.
The Wolffs’ pursuit included countless doctor appointments, medical tests, such as an MRI and CAT scan that checked for deformities, and a hearing aid trial period that yielded no hope of sound for their boy.
A blood test revealed that Oliver’s deafness was genetic, the result of each parent unknowingly carrying a gene that robbed him of his hearing.
As for their personal anguish, Shannon says they simply set it aside in favor of action. “You just do what you have to do for your child. He had a problem that we had to solve.”
Technology Saves the Day
First developed in 1979, cochlear implants have sparked hope for thousands of the hearing-impaired across the world. Described by some as a “bionic” ear, the electronic implants bring sound and speech where once there was nothing but silence.
According to the American Speech-Language-Hearing Association (ASHA), a cochlear implant is a “device that provides direct electrical stimulation to the auditory nerve. In sensorineural hearing loss where there is damage to the tiny hair cells in the cochlea, sound cannot reach the auditory nerve. With a cochlear implant, the damaged hair cells are bypassed and the auditory nerve is stimulated directly.”
The ASHA reports that roughly 14,000 individuals in the United States have received cochlear implants; 30,000 worldwide.
Not everyone is a candidate for cochlear implants, but Oliver was.
“It was discovered that his inner ear was the problem. The hair cells that move with sound waves within the inner ear were either not present or not functioning,” Shannon says. However, once the Wolffs had their answer, the question became, “How do we get this done?”
Insurance and Other Matters
The Wolffs soon learned what millions of other Americans have learned when facing a potentially catastrophic illness—resources are limited.
The initial surgeons who they consulted were not comfortable implanting the device in both Oliver’s ears at just 6 months old, despite the Wolffs’ intensive research that suggested it could and should be done. Their insurance would not cover the procedure until Oliver was over 1 year old. Even then, he was only approved for implantation in one ear.
The Wolffs resumed their search, this time finding a leading surgeon, Dr. Joseph Roberson from the California Ear Institute/Let Them Hear Foundation at Lucile Packard Children’s Hospital at Stanford in Palo Alto. He was familiar with cutting-edge studies and agreed to perform the surgery at a reduced fee. Still, the costs were sizable.
“We started fundraising. We set up a fund and started collecting donations. We received help from family and friends and strangers, groups like the local Kiwanis and the Lions Club were especially generous,” says Shannon, adding that they raised enough for a decent down payment.
In a gesture of goodwill, the hospital wrote off the remaining balance and at just 6 months old, Oliver received bilateral cochlear implants and a fast-forward pass to sound.
The Rewards
With the help of a speech and language therapist, Oliver had already caught up in his language development by the time he was 1 year old.
At just 18 months old, Oliver’s progress was deemed so successful that he required only once-a-month speech and language sessions. At 2 years old, he was mainstreamed into a regular preschool classroom.
Looking ahead to kindergarten, Shannon knows that challenges remain, but feels as though some of the biggest hurdles are behind them.
“After his first full year of life, I felt I could finally breathe. Elementary school will be another transition and he will probably need help in making that adjustment, but so far, the outcomes have been fantastic,” Shannon says, noting that Oliver’s speech is clear and unmarked by what some characterize as a deaf tone.
“Oliver is so funny, telling jokes all the time. He loves using big words. He loves to boogie board and play T-ball and pretend to do magic. He is curious and engaged and interested in the world. He is amazing and loving.”
Shannon says that part of her mission now is to educate others about the curious device that Oliver now wears close to his ears, and encourage insurance companies to provide speedy access to sound for hearing-impaired infants.
“It’s gotten better. Bilateral implants are now a standard of care,” Shannon says, adding that for parents faced with similar afflictions, her best piece of advice is to become an expert in whatever their child’s challenges are. “Don’t take no for an answer.”
Resources
American Speech-Language-Hearing Association
Cochlear Implant Awareness Foundation
Hearing Health Foundation
Deaf Community Services of San Diego
Hands & Voices
National Center for Hearing Assessment and Management
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Kerri S. Mabee is a freelance writer and longtime contributor to San Diego Family Magazine.
