Marvin Santos hugs his mother Maribel Santos during an appointment at Vanderbilt last month. (photo by Dana Johnson)
If he could hear what we hear — Cochlear implant offers precious gift to four-year-old
Marvin has a pre-op exam at Vanderbilt. He was perfect fit for the procedure, according to the medical staff who performed the operation. (photo by Dana Johnson)
Four-year-old Marvin Santos sits on an exam table recently slightly squirming while three women discuss the surgery he will have in a few days. He doesn’t recoil at the talk of the IV needle, or flinch at the demonstration of the anesthesiology mask that will whoosh sleep into his body.
Marvin lives in Guatemala City. Spanish is his native tongue. But a language barrier doesn’t stifle the emotional responses. He also doesn’t react to the crunch of the white paper covering the exam table, or to the loud thud of his hand against the wall when he hits it playfully.
Marvin can’t hear. Born deaf, childhood sounds — even the squeals of holiday joy, the jingle of bells or chorales of carolers, sounds that resonate a lifetime — have never registered in his memory.
But his mother, Maribel Santos, brought him to Vanderbilt hoping that will soon change, a Christmas wish in the making. The two traveled here, carried by the benevolence of Healing Wings, a Nashville-based organization run by two women at Westminster Presbyterian Church that pays for children to receive medical care, so Marvin could receive a cochlear implant, a device placed into his inner ear that processes sounds and stimulates the nerves along the cochlea.
A team of nurses and physicians donated the better part of a Saturday to Marvin’s care, their gift to him.
“Marvin and his mother were extremely nice and gracious people,” said Tim Clemons, R.N., operating room manager for several divisions, including otolaryngology, who coordinated Marvin’s care at Vanderbilt.
Dr. David Haynes, associate professor of Otolaryngology at the Vanderbilt Bill Wilkerson Center, was Marvin’s otolaryngologist who performed the surgery. Haynes had worked with Healing Wings before. When they notified him of Marvin’s case, he sent them to Clemons, who plays Claus in this holiday story.
The implant’s manufacturer, Cochlear Corp., had donated a device to the hospital; it was up to Clemons to decide what to do with it. When Healing Wings called, he quickly began making arrangements.
Children in Tennessee who need the implant are often covered by insurance, many of them by TennCare, Clemons said. Marvin, however, had no such luck. Only one physician in Guatemala has performed a cochlear implant, and he has only performed a small number of them, Maribel Santos said. The device would cost the family about $25,000, plus expenses for hospital care and follow-up therapy. It was prohibitive. Marvin, Clemons and Haynes decided, was a perfect fit for the available device.
Word of Vanderbilt’s generosity was music to Maribel’s ears. “It is a miracle,” she said, her English skills polished as an executive secretary. Marvin was born three months premature and spent a month receiving oxygen, Maribel said. At a year and a half, Marvin was not responding to his parents’ voices. The cause of Marvin’s deafness isn’t fully known, but the result is a glitch in the hair-like nerve receptors along the curling cochlea inside the ear that normally translates sounds into electrical impulses sent to the brain. The implant will do that for Marvin.
Three companies make cochlear implants, and Haynes and colleague Dr. Rob Labadie, assistant professor of Otolaryngology, implant all of them, totaling about 25 a year, many of them in adults. Vanderbilt was a test site for some of the models, including the one Marvin will receive.
The sooner after becoming deaf someone can be fitted with an implant the better, Haynes said. “There’s a degree of atrophy to the cochlea and auditory portion of the brain that, if it goes unstimulated, is lost,” he said. For many patients, it means being able to communicate and live life without the absence of sound.
Marvin’s family, including his 8-year-old sister, Gabriella, and his father, Marvin, have worked out their own means of communicating. Still, Maribel feels a void even a mother’s intuition cannot fill.
“Sometimes, I don’t understand what he wants,” she said. “Sometimes, he doesn’t want to show me what he wants. He starts to cry because he doesn’t understand.”
And despite his boyish energy and sense of exploration, not being able to hear means Marvin’s childhood isn’t all it should be. Guatemala City is a dense urban environment of more than nine million people, with pitfalls for children who can’t hear the warning sounds of car horns.
“It’s difficult for him to play with other kids,” Maribel said. “His sister is patient with him. She tries in many ways to understand him.” But Maribel’s smile melds into an exasperated expression, one she has become accustomed to delivering, because eventually everyone, even Marvin, runs out of patience.
On Nov. 17, Marvin, Maribel and Sylvia Leins of Healing Wings and Sydney DeWitt, a friend of Leins’ from church who serves as an interpreter, arrive in Medical Center East pre-op area at 6 a.m. The floor is empty, except for the staff who donate their time just for Marvin. A pre-op nurse is waiting for them and prepares them for the surgery. OR nurses come by to check on him. An anesthesiologist delivers his pre-op explanation.
During two and a half hours in the OR, Haynes carefully opens Marvin’s ear, threads the implant into the cochlea and positions it, then attaches an auditory receptor to his skull, behind his ear. A small group of nurses watch the procedure in Light Hall via teleconferencing, another of Clemons’ arrangements for nurses to earn continuing medical education credits.
After the surgery, nurses wheel Marvin into the recovery room with a huge bandage around his head. Over the next two weeks he visits Haynes for checkups. On Nov. 30 he’s released from care, and two days later he and his mother fly back to Guatemala. He will see hearing and speech therapists there. They will “map” the implant, adjusting the receptor and speech processor until his hearing is fine-tuned. They will also teach the precocious boy to form sounds into speech.
Although Marvin doesn’t know what he’s been missing, being able to hear the joyous sounds of laughter and the calls to dinner are atop Maribel’s wish list for her son.
This year when the family shouts “Feliz navidad,” Marvin might hear them. At least now there’s hope. Next year, after a year of therapy spent programming the device, learning how to hear and, hopefully, how to speak, maybe Marvin will join in.