Boy to get chance to hear

From: Oneonta Daily Star, NY - Nov 1, 2003

By Melissa Scram

Staff Writer

OTEGO —In many ways, Cristian Marsh is like other toddlers going on 2. He's curious and full of energy, and he knows how to charm everyone in the room.

There's one difference. Cristian is profoundly deaf.

"He's never heard my soothing voice when he's upset," said his mother, Melody Marsh. "He's never heard me sing, he's never heard his father and siblings."

But in the next couple of months, that will change.

On Wednesday, Cristian will undergo surgery to receive a cochlear implant, a medical prosthesis that allows the deaf to perceive sounds.

A 'rapid learning curve'

The Marsh family adopted Cristian from Guatemala in January, his parents said, and noticed right away that he wasn't responding to sound, including his own name. He also had six ear infections between January and May.

He was diagnosed in May as profoundly deaf, they said.

"It was very devastating," Melody Marsh said. "But we chose not to be bitter, and instead we're excited about what kind of life Cristian is going to have."

In addition to the challenges of having a toddler, family members have also had to adjust to deal with one who can't hear them.

They put up a fence around their house in Otego so Cristian can't run into the street, and they asked the village to post a sign reading "Deaf Child Area."

Friends and relatives put the Marshes in touch with other families of deaf children. Melody Marsh said she went through three phone cards calling them and facilities such as the Children's Hospital of Philadelphia. The family's physician also put the Marshes in touch with resources including the county's early intervention services.

The couple made the decision to have Cristian receive the implant, a procedure Melody Marsh said is somewhat controversial in the deaf community.

"It's a tool to mainstream," said his father, Don Marsh. "That's our goal."Meanwhile, the family has been working with Cristian, 23 months, to develop his language skills. His parents and siblings - Zachary, 20; Jesse, 18; Leah, 15; and Genevieve, 5 —as well as their extended family, started learning sign language.

"This has been a rapid learning curve," Don said.

"It's been sink or swim," added Melody.

On Wednesday, Cristian ran across the Marshes' living room and handed his father a book of pictures the family put together. His father flipped through the book, showing Cristian the pictures and speaking the words, while both of them signed the object's name.

Cristian has been learning rapidly, they said, and already knows about 60 signs.

He's also very vocal, his parents said, and can say three words —hot, mama and moo.

"Every day we stop at Davey Johnson's farm and look at real cows to practice our `moos,'" Cristian's mother said.

Cristian works five times a week with Chris Wilber, a speech language pathologist and teacher of the deaf with the county's early intervention program.

"I'm not feeling hesitant to say that this is one of the brightest kids I've worked with," Wilber said.

Wilber structures Cristian's lessons as play, she said, using toys and other visual cues, and sometimes involving his sister Genevieve. They worked on the signs for eyes, ears and nose Wednesday, using a Mr. Potato Head doll.

Wilber also takes him for field trips, running errands to Southside Mall or Hannaford.

"Part of early intervention is you take the kid into the community," Wilber said. "And he is such a magnate for people."

A big week for Cristian

Cristian's surgery, which will take three hours, is scheduled for Wednesday at Albany Medical Center, his parents said. The procedure, which costs $75,000, is covered by insurance.

It's a big week for Cristian. Not only is he having the surgery, but two days beforehand, he'll become a U.S. citizen and officially the Marshes' child.

A cochlear implant is a medical prosthesis like a pacemaker, according to Sharon Rende, director of audiology and the pediatric and adult cochlear implant program at Capital Region Otolaryngology.

When a person has a hearing loss, hair cells in the cochlea are damaged, she explained. The implant is an electrical hearing device that mimics the function of those cells.

The device consists of two parts: the implant, which is surgically installed, and a speech processor, which is worn externally.

"He's a deaf child now, he's a deaf child for life," Rende said. "The implant is not going to change that. It's just another way to access sound."

Implants can be done on children 1 year old, sometimes even earlier, she said.

Cristian's implant will be activated in December, his parents said, to give him time to heal.

"It's a very exciting day, and it's a day families look forward to," Rende said. "And it can be a very disappointing day. Nine times out of 10 a child screams and is terrified. They've never heard sound before, and all of a sudden you're putting sound in their head."

The results will be very subtle in the beginning, Rende said. For the first three months, the child will be getting used to sound.

The implant surgery and subsequent rehabilitation is a four-year process, she said.

"It's not a quick fix," Rende said. "It takes a lot of time, a lot of rehab, and a lot of work on everybody's part."

Rende will be working with Cristian to program his device to tell it how to stimulate the electrodes when sounds come in.

Cristian will continue to work with Wilber, and also with Maria Wilson, a speech language pathologist in Binghamton.

Eventually, as he becomes more oral, he may use sign language less, his parents said.

"But we're hoping he could use that as a bridge to other deaf children," Don Marsh said.

The family has also gotten the community involved, holding an informational session last week for people in the Unatego Central School system, early intervention and other programs.

Once Cristian is in school, he'll need an FM system set up in the classroom, so he'll be better able to hear what the teacher is saying, especially when his or her back is turned.

"Basically we wanted to get them on board now, so we don't drop a bombshell on them when he's 3," Don Marsh said.

And the community has been very supportive, the couple said, from Bugbee School in Oneonta, which was host for the informational session, to Main Street Baptist Church, which the family attends.

"It's like this huge team," Don Marsh said.

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