For 3-year-old Chapel Reed, born in China without outer ears and profoundly deaf, life changed forever when a family from Louisiana adopted her in 2016.
The Reed family, of Vidalia, was not new to adoption. The impetus for their three prior adoptions had an unusual origin. It came to mother Calley Reed in a dream.
“I was in a muddy river in South America surrounded by hundreds of drowning people. I was too scared to help, paddled away and swam to the edge of the river, where I saw a mall. I started shopping without a thought to the drowning masses. I woke up and couldn’t shake the feeling that it was a signal from God that I needed to do more,” she said.
Three children from Peru followed, while Calley Reed gave birth to a fourth. But the little one from China, renamed Chapel (father Danny Reed is a minister), came with some surprises.
“She weighed only 16 pounds when we brought her home at 26 months, and while we were aware she had no external ears, we were told her inner anatomy was working,” Calley Reed said. “Once back in Louisiana, she was responding to noises, so we assumed she could hear.”
Not knowing Chinese, the family diligently tried to learn sign language as common ground, but pantomiming became the order of the day. With time, however, it appeared the baby was responding to vibration, not actual sound. The family set out to get the best medical professionals involved.
“Testing revealed Chapel had total paralysis of the right side of her face, no ear canal there, or hearing nerve … making the potential for hearing in the right ear virtually impossible,” said Dr. Moises Arriaga, clinical professor of otolaryngology at the LSU School of Medicine and neurotologist with the CNC Hearing and Balance Center in New Orleans. “On the left side, her cochlea (which receives sound) was deformed, and her facial nerve had taken a funny path covering her cochlea, making any potential surgery enormously difficult.”
The family was given various options: proceed with sign language; try to implant a cochlea in the traditional way but risk left-side facial paralysis; or try an unusual, complicated approach — a surgical procedure entering from the brain. The Reeds opted for the complex surgery, then scheduled it at Children’s Hospital of New Orleans.
“Ordinarily, implants are put in from behind the ear,” said Dr. Frank Culicchia, chairman of the LSU Health New Orleans Department of Neurosurgery, “so to avoid potential paralysis, her brain was lifted from above, so the cochlea could be found."
The procedure had never been done with a child, and only in a handful of adults worldwide, Culicchia said.
“With children, their brains are very tight in the skull space,” said Dr. Jerome Volk, the pediatric neurosurgeon from Children’s Hospital who operated on Chapel. “So a lumbar puncture removed fluid, reducing the pressure, so we could move the brain and Dr. Arriaga could reach the cochlea and implant the electrode.”
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One week ago was D-Day for Chapel, when Dr. Dori Viator, her audiologist at Our Lady of the Lake’s Hearing and Balance Center in Baton Rouge, activated the magnetized processor placed against her head and lined up with the cochlear implant underneath her skull, with the goal of transmitting sound to her brain. Family members watched and waited.
“I told her parents she may never develop speech and language,” said Viator. “Just getting sound to register in her brain would be our first hurdle. At 3½, that portion of Chapel’s brain which interprets sound had been long dormant."
But with the first burst of sound from the computerized processor, it was evident that a new world had opened for Chapel. Teary-eyed family and staff watched, astonished.
“I can’t believe she’s connecting the dots between our family’s snapping fingers and the primitive noise she’s hearing,” said dad Danny Reed. “She’s trying to snap, too.”
“Did you see her pick up my hand with the processor and bring it to her ear?” inquired Viator. “She actually understood that the sound was coming from that side of her head. That’s amazingly genius, and something we don’t ordinarily see.”
“In two days, we’ve already turned up the processor to the next level of refined sound,” said mom, who’s expecting child No. 9 in May. “And Chapel is starting to realize that her name is more than a sign: It has a sound.”