Moving Past the Sounds of Silence

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DALLAS -- Imagine silence. Not just from turning off your cell phone, TV and other audible distractions, but absolute silence -- as if the world's volume was turned off.

Photo by Adam Korst

Ben's ear barely pokes out from a sea of sterile blue paper that covers his entire body during his surgery at Oregon Health & Science University in Portland. Above the paper, the steady hands of Surgeon Sean McMenomey guide the drill and suction as McMenomey himself sits behind a large 3D microscope.

DALLAS -- Imagine silence.

Not just from turning off your cell phone, TV and other audible distractions, but absolute silence -- as if the world's volume was turned off.

That was the world Ben Casalegno was born into one year ago today. Gregarious Ben isn't likely to remember that quiet landscape, thanks to a cochlear implant and his family's unwavering dedication to introduce him to sound.

"Our goal is to give him options," Ben's mom, Jen Casalegno said.

She said that she and Ben's father, Adam Casalegno, decided on the implant -- and the surgery involved -- not to "fix" their son, but to give him access to language, through sign and sound. Having a foundation in both will allow him the choice later in life to use the implant or to live without it.

"To us, he is perfect," Jen said. "We are just helping him to adapt more. It's not that something's broken."

Waiting for a diagnosis

Twelve hours after Jen held him for the first time, infant Ben is taken for a customary newborn hearing screening.

He failed, but nurses assure the new parents that many babies fail the test and few actually have hearing loss.

The next night, he failed the test a second time.

In the next few weeks, Ben had several more tests, resulting in opinions from several doctors. While waiting for a definitive diagnosis, Ben's parents do their own testing. They clap their hands and slam pots and pans together near Ben's ears.

They hoped for a response. They never saw one.

Three weeks after Ben was born, they find out why. He was born with enlarged vestibular aqueducts in both ears. Jen Casalegno said the malformation allows too much liquid in the cochlea, which damages the tiny nerves that detect sound. Ben's hearing also will worsen over time.

Jen said the realization that her son has never been comforted by his parents' words and voices devastated her. But the family didn't dwell on the diagnosis for long.

Ben's search for sound

Immediately after suspecting Ben's hearing loss, the Casalegnos contacted the Willamette Education Service District. ESD Audiologist Nadine Palmateer saw Ben and Early Intervention Specialist Angie Mulkey was assigned to help him and his family.

At nine weeks old, Ben was fitted for his first hearing aids, borrowed from the ESD.

"That was the first time he heard anything," Jen said. "He opened up his eyes and looked around at us. It was really cool."

With the hearing aids, he can hear loud noises, such as a running vacuum. Because Ben's right ear is classified as profoundly deaf, he qualifies for an implant after wearing a hearing aid for three months. Meanwhile, Ben began learning sign language.

The Casalegnos examined their choices, debating whether to implant or not. Eventually they decide an implant is the best option. Unlike his hearing aid, the Cochlear Nucleus 5 implant won't amplify sound, but detect and process it and electronically stimulate Ben's auditory nerve.

They scheduled the surgery at Oregon Health & Science University in Portland with Dr. Sean McMenomey, a surgeon who had performed more than 100 implant surgeries in the year before Ben arrives in the operating room on Dec. 23.

A long day at the hospital

The morning of the surgery, doctors and nurses are streaming in and out of Ben's pre-surgery waiting room. The blond, bright-blue eyed boy is the star of the pre-surgery area in a pair of bright red pajamas covered in reindeer antlered puppies. The almost 1-year-old, not quite toddler even shows off a bit, taking wobbly steps between his parents. He's small, but determined and relishes all the encouragement he can get from onlookers. He rewards his playmates with smiles and giggles.

He then turns his attention to playing with a toy apparently meant to teach children about shapes. Ben's more enamored with hitting it with a toy hammer. His swing is pretty good until the pre-surgery anesthetics begin to take effect. By the time the surgeon is ready for him, Ben struggles to keep his eyes open.

At 10 a.m., Jen carries him toward the operating room. She stops where parents could go no farther. Jen and Adam then say a nervous goodbye. Ben groggily responds, slowly opening and closing his little hand in the sign for "bye-bye."

The anesthesiologist takes him from Jen. Ben continues to sign goodbye as he is carried through a set of doors and disappears.

In the operating room, a six-member team of nurses and doctors makes quick work of prepping Ben for surgery. He is placed under anesthesia, hooked up to several monitoring devices, a breathing tube, and completely covered in sterile blue paper. Only a small, 11-month-old ear peeks out from the blue paper, just enough for the operation.

A nerve-racking wait

After handing Ben to the team, the Casalegnos decideto wait out the surgery elsewhere. They drop off a prescription at a hospital pharmacy and weave their way through the maze of buildings, elevators and skybridges at the gigantic OHSU hilltop complex to find a Starbucks.

Adam and Jen order coffee drinks, return phone calls and text messages from family and friends.

And they wait.

"It's pretty nerve-racking sending your son in to get worked on," Adam says. "I'm nervous and excited -- because it's a good thing."

Ben is in the operating room for two and a half hours. The procedure consists mostly of drilling a small section behind Ben's ear, a nest for the implant. The melodic beeping of monitors and the practiced hands of the medical team seem to work in sync with each other.

McMenomey's part of the procedure is seen completely through the lens of a large microscope that gives him a three-dimensional view behind Ben's ear. A small incision -- only a couple inches -- is all that is needed for the surgery. With a drill in one hand and suction in the other, McMenomey works without saying a word, except to occasionally request another tool.

While Ben is completely under anesthesia, the implant is turned on, connected to a laptop computer, and tested to insure the device is working. While in a medically induced sleep, for the first time in his right ear Ben hears his first sound.

Finally, he is wheeled into recovery.

Still in the coffee shop as 11:30 a.m. approaches, Adam grows anxious. The couple is ready to see their son and find out how the surgery went. They have to wait until after noon, when they are told the operation went well. Ben is taking awhile waking up. Jen and Adam go to see their son in recovery.

A short time later, Jen carries her son to his waiting room. Ben is groggy and fussy, and an enormous step closer to completing his journey into a hearing world.

Next week: Ben's implant is activated and he begins adjusting to a noisy world.