Thursday, October 22, 2009

‘Today Show’ shines spotlight on Grenada family

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When Ryan and Jennifer Root want to look back at their 1-year-old son’s first reaction to the sounds around him, they will have an interesting way of watching it – with the rest of the country on the “Today Show.”
A crew from the show was in Grenada on Wednesday to film the Root family for part of an episode that will air some time in December.
The reason for the Root’s 15 minutes of fame: All three children – Grace, 8, Evelyn, 6, and Mark, 1 – were born severely or profoundly deaf and will undergo surgery for cochlear implants on Oct. 27.
When the public relations department at the hospital where the surgeries will take place got word that all three children were involved, they contacted TV stations, and NBC picked up the idea.
“It’s just a remarkable family story,” said Producer Ian Wenger. “You don’t see something like this very often.”
While she acknowledges that many people are compelled by a story like theirs, Jennifer said it’s “just life” for the family.
Deafness is hereditary in Jennifer’s family, and she is deaf in one ear, so she said she wasn’t surprised when the children were born deaf.
When Grace was born in 2001, her parents requested that her hearing be tested because of the family history. Tests confirmed her severe deafness.
By the time Evelyn was born, in 2003, and Mark was born, in 2008, Fairchild Medical Center had adopted the California Newborn Hearing Screening Program, which tested all newborns for hearing loss. Both were born profoundly deaf.
“When you find out that your brand-new, perfect baby isn’t perfect, it’s devastating,” Jennifer said. “But once you get past that and grieve, you sit back and say, ‘What do we need to do?’”
All three children were wearing hearing aids by the time they were 6 months old, but only Grace seemed to really benefit from them.
Jennifer said they almost didn’t get an implant for Grace because she was doing well with the hearing aids. But when Evelyn didn’t do well, they decided to get implants for both girls.
In August 2004, Grace and Evelyn underwent surgery – one day apart from each other – for their first cochlear implants.
The girls have been part of a study since then titled “Childhood Development After Cochlear Implantation,” sponsored by Johns Hopkins University. Jennifer said both girls have shown tremendous improvement and have the ability to function at a mainstream school.
Now, they will receive a second implant for their other ear – in order to increase access to sound and for safety – and Mark will receive one for each ear.
When someone is born deaf, the hairs on top of cells in the inner ear, or cochlea, are missing.
Cochlear implants are electronic devices that convert everyday sounds into coded electrical impulses that go to the electrodes in the cochlea. Those pulses then stimulate the hearing nerve, and the brain interprets them as sound.
The system consists of an implant surgically placed under the skin and an external speech processor.
According to Lesley Clark, Deaf and Hard of Hearing teacher for the Siskiyou County Office of Education, the implants improve hearing but do not completely restore the sense.
With one cochlear implant, Grace and Evelyn are able to hear. However, they are limited in their hearing ability.
It is hard for them to decipher individual voices when many people are talking at once. And it is important that most speaking be done on the side where they currently have an implant.
In fact, Grace – who requested the second implant when her parents were considering implants for Mark – said she is most looking forward to that changing.
“I am looking forward to being able to sit on either side of my teacher,” she said.
The children will still be considered deaf, their mother said, because if the equipment fails, it is too loud for them to hear clearly or if they are in the bath or are swimming (they can’t wear the equipment while in water), they still can’t hear correctly.
That is just one reason why Jennifer said she and Ryan will insist her children continue to learn sign language. They will utilize any means of communication available.
But that’s not always easy.
“Communicating with sign is tedious,” she said. “It’s kind of like speaking Shakespearean English all day. Sometimes you can’t remember everything, and there are a lot of things there aren’t signs for.”
This month’s surgery, like the girls’ first, will be covered by California Children Services, a branch of Medi-Cal that provides coverage for children with disabilities. It will be an outpatient surgery performed at the House Ear Institute’s Children’s Auditory Research and Evaluation (CARE) Center in Los Angeles.
The Roots found the CARE Center with the help of Clark, Speech and Language Therapist Leslie Tragitt and Program Manager Linda Richter. All three work with the Siskiyou County Office of Education, which serves about 28 deaf or hard-of-hearing children throughout the county, and has provided services to all three children.
In fact, Linda said, they knew Jennifer before she had any of the children. Because of Jennifer’s history of dealing with deaf family members, she knew a fair amount of sign language and acted as a translator for the women.
Now, the team of women provide therapy sessions for Mark at home and assistance for Grace and Evelyn at school.
“Most parents want their children to be able to speak the same language as they do, and we try to help make that happen,” Clark said.
Part of Mark’s therapy session with Tragitt was taped for the “Today Show” episode. The crew – consisting of Wenger, Correspondent Miguel Almaguer and Cameraman Dan Edblom – also followed Grace and Evelyn at Grenada Elementary and did individual interviews with Ryan, Jennifer and the therapists.
They will also be there the day of the surgery and at their first set of follow-up appointments Nov. 30-Dec. 2, where the external processors will be attached. Each child will have three appointments during that time.
“They particularly want to be there for Mark at that point, because he has never been able to hear anything,” Jennifer said. “The girls will have some reaction, but not as much as Mark will.”
She told the “Today Show” crew she was glad they would be there to capture the moment when he hears his first sound, because she’ll want to remember that.
She shared a moment she experienced with Grace just the other day. Jennifer asked Grace what the first thing was that she could remember when her “ear” was turned on.
“She said, ‘I remember you said Grace.’ She remembered hearing her mom say her name for the first time,” Jennifer told the room full of people. “I just wonder what Mark’s first sound will be.”