Shelley Neal: Cochlear implants let children live life with sound

26 02 2009

February 25, 2009 @ 08:15 PM

Cochlear implants deliver miraculous results to those who are profoundly deaf. Children who were once destined to live life in complete silence are now able to benefit from the advances made through modern technology. The cochlear implant is an excellent choice for parents who want their children to experience the world of sound.

Six-year-old Emily Neal was born deaf, but can now hear thanks to implant surgery conducted when she was an infant.

Six-year-old Emily Neal was born deaf, but can now hear thanks to implant surgery conducted when she was an infant.

As the mother of a child with bilateral cochlear implants, my experience began when my daughter, Emily, was diagnosed with profound hearing loss in both ears. While other babies were learning to use their voices to communicate, Emily was learning to use her hands. Living the first year of her life in silence, Emily was oblivious to sound. Since no one else in her family knew sign language, Emily’s communication was limited to conversing with me, her mother.

During a visit with Dr. Thomas Jung, Emily’s neurotologist, I learned that Emily was an excellent candidate for the cochlear implant. Upon hearing this, I became overjoyed, yet uneasy, being as no surgery comes without risks. Emily was a happy child and loved beyond words. Why would I purposely send her into surgery when she is already perfect? Why can’t everyone just learn how to sign? These questions continually lingered in my mind, as I had a life-changing decision to make for my child. Nonetheless, a decision had to be made.

While spending time in prayer, I asked the Lord to use her for His glory and chose to go forward with the surgery. One month following surgery, Emily’s cochlear implant was activated. Immediately after activation, her audiologist, Pamela Vannoy-Adkins, turned the device on; Emily cried in horror! She was experiencing a new sense: sound. Going from a peaceful environment to one filled with noise, simply overwhelmed her. Once again, I questioned my decision.

Prior to surgery, Emily was attending speech therapy at Marshall University twice a week to learn sign language. After receiving her cochlear implant, Emily’s therapist, Amy Knell, focused on her oral communication skills. Emily was eager to learn and made every effort to understand the sounds around her and tried to make sense of them. Everyone marveled at her progress. After five years of intensive speech therapy and many prayers, Emily had reached her full potential and was discharged from the program. She has since undergone a second cochlear implant operation making her the first child in the state to acquire bilateral cochlear implants.

Today, Emily is a first-grader who makes straight “A’s,” and reading is her favorite subject. Had I made a different decision, Emily would either be in a school for children with special needs or would require a sign language interpreter throughout her life. Watching her interact with her peers and hearing the words “I love you Mommy,” validates the decision I made for her six years ago. The benefits of the cochlear implant far outweigh the risks. Thank God for Dr. Jung, the staff at Tri-State Otolaryngology, Amy Knell, the Scottish Rite Program at Marshall University and modern technology in the form of the cochlear implant.

Shelley Neal is a stay-at-home mom and a student. She resides in Chesapeake, Ohio.





A Mother’s Wish for Her Deaf Child

24 02 2009

Author: Paula Rosenthal

A mother of a 5 year old deaf child recently blogged glowingly about her daughter’s acceptance of her deafness. The mother asked her daughter what kind of baby she wished for when she grew up, hearing or deaf, the child answered, “Deaf!” The mom went on to say that nothing would make her happier than to see her daughter marry a deaf man and have lots of deaf babies.

It is interesting to note that this child’s parents both have normal hearing and have recently decided to have her undergo cochlear implant surgery and rehabilitation. Due to the limits of her current deaf school placement, the parents are subsequently exploring a change in her educational program, possibly to an oral deaf school. The child is becoming bilingual, learning to speak and uses American Sign Language (ASL).

Like some of the other commenters on her blog, this woman’s wish for lots of deaf babies for her daughter really threw me and I couldn’t remain silent. I commended her for teaching her young daughter to accept herself and her deafness. It is such a key component to anyone’s self-esteem. But I also cautioned her that her daughter may not always feel this way. Parents shouldn’t be surprised if there are times when their child says, “Why me?” as they grow up. It is common, particularly during the teenage years when kids feel both internal and external pressure to “fit in” with their peers.

I’ve been hearing impaired and now deaf for nearly my entire life, diagnosed with a progressive hearing losa at age 3. When my daughter’s hearing loss was diagnosed a few weeks before she turned two, my mother and I briefly cried together. It isn’t easy having a hearing loss. Whether you use sign or spoken language, hearing aids, cochlear implants or nothing at all, a deaf or hard of hearing person always has to work harder than a person with normal hearing.

Obviously, like anyone else, we can be successful at anything we want and we can lead wonderful lives. But I wouldn’t (and didn’t) wish that I had a deaf child so she could be like me. I wished for healthy children, and most thankfully, I was granted that wish. I wish the same for my daughter, that she grows up happy, fulfilled and with healthy children someday. If they’re deaf or hard of hearing, so be it, but that’s not what I wish for her or them. Whether you view hearing loss as a disability or not, wishing for children with it is the same as wishing for blind children or crippled children. A physical challenge is just that, a challenge. Why would anyone want their child or grandchildren to start life that way? Life is challenging enough. What do you think?





(Illinois) Her big day: After months of prep, deaf toddler heads to operating room for cochlear implants

13 01 2009
By Jessica Young, jyoung@mysuburbanlife.com
GateHouse News Service

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By snapshots.mysuburbanlife.com/647075 Staff photo by John Cox Anesthesiologist, medical technician and Dr. Robert Battista prepare Lauren for bilateral cochlear implant surgery.


Western suburbs, IL –

Silent and unmoving, Lauren White’s tiny, 17-month-old frame lay on the operating table.

Her anesthetized body was buried under a mound of blankets secured with a thick black strap fastened by a sturdy metal buckle. Only Lauren’s turned head peeped out from the bundle. With her eyes taped shut, a clear accordion tube inserted in her mouth and a shaved patch of hair behind her right ear, she bore little resemblance to the lively toddler she is under more normal circumstances.

A small purple map marked the spot where Lauren’s head soon would be sliced open, to make way for one of two cochlear implants.

Assembling on a fall morning, a well-trained contingent at Adventist Hinsdale Hospital set about the task of trying to give a young, deaf girl the gift of sound.

A nurse drenched Lauren’s first ear with iodine, the orange liquid marring her alabaster skin. Then, exacting and gentle but forceful and determined, head surgeon Dr. Robert Battista made the first incision at 8:53 a.m.

With a perfect ivory skull exposed, Dr. Battista started drilling. Little by little, he dug a snug cavity for the first implant, measuring his progress with a gummy device to mimic the final product.

By 10:03 a.m., just over an hour after his hands began to move, the doctor was ready to flip sides.

Little time was wasted before the second ear was under the microscope. Once again, streaks of startling iodine drowned half of Lauren’s head, and at 10:20 a.m., the doctor announced, “round two.”

The procedure, completed on Oct. 21, 2008, was history-making for Hinsdale Hospital as the first pediatric, simultaneous bilateral cochlear implant operation. The White family of Wheaton allowed a team of Suburban Life reporters and photographers to follow their journey, including Lauren’s surgery in the operating room.

Two hours and 38 minutes after the doctor’s final scrub down, two tiny devices lay imbedded in Lauren’s skull, outfitting her with the ability to hear.

THE WAITING ROOM
Unaware that the sight of their daughter’s cranial tissue layers was displayed on mounted flatscreens in the operating room, parents Jennifer and Todd White were safely ensconced in the waiting room.

The family was eager to replace Lauren’s ineffective hearing aids — or earrings, as big brother Colin refers to them — with cutting-edge cochlear devices. But the level of achievable success largely depended on what Battista found when he cut her open.

“This is torture — we just want to fast forward the clock,” said Todd, sipping coffee and glancing at his watch. “It’s hard to be left in the dark.”

The one consolation was a piece of information gleaned from the sign-in desk attendant, an elderly man sporting a red coat: Lauren was patient No. 1.

“That’s got to be a good sign, right?” Jennifer said.

Jennifer’s parents, Tom and Barb Finn of Lombard, and sister, Kelley Finn of Chicago, arrived with Colin shortly after 9 a.m., and the group quelled the pervasive restlessness by heading to the cafeteria.

“Give me something to do — I need a task,” Barb said, flexing her hands and squeezing them into fists as she collected her belongings and followed the gang to the elevator.

Sitting down in a booth, the adults traded cochlear implant information they’d researched on the Web as 3-year-old Colin entered into negotiations for a breakfast of Twizzlers, Rice Krispies and a sucker.

By about 10:20 a.m., the family had wandered back and settled in around a table at the far end of the waiting room.

Still in scrubs, Dawn Maniskas, the pediatric audiology coordinator, peeked her head in the waiting room at 10:41 a.m.

“She’s doing great — the doctor’s working on No. 2. It’s all beautifully orchestrated,” said Maniskas, who would be checking the integrity of the electrodes after Battista stitched up Lauren.
The news was a relief, but soon the restlessness resumed.

Jennifer pulled out a book, but at Barb’s goading — “You’d probably read the same paragraph over and over again” — she didn’t bother to open it.

Then Colin, cognizant of his sibling’s absence, said what everyone else was thinking: “Is Sis here? All of us go see her.”

DEBRIEFING
At 12:11 p.m., Battista entered the waiting room, abruptly snapping the Whites out of their daze.

The doctor escorted Jennifer, Todd and Colin into a tiny room across the hall. Barb, Tom and Kelley were left behind. The unadorned room was snug — more cubbyhole than conference room. Battista was tranquilly seated in one of the chairs lining the wall. He calmly related the events of the morning.

“She’s fine. She’s in the recovery room,” Battista said, getting right to the point. “She’s moving her face just fine.”

The news was good — a sign that Lauren had not suffered any facial nerve damage, which is a significant risk in cochlear implant operations.

“She’s got the Princess Leia headdress on right now, so she’s got the big bandage, and probably her cheeks are big,” Battista said to laughs and smiles. “The implant went all the way in. So sometimes it doesn’t go all the way in (because of the anatomy of the ear) — that’s why I say that. But it went all the way in on both sides.”

“And that’s a good thing, right?” Todd said.

“That’s a very good thing. The further we can get in, the more we can stimulate,” Battista answered. “As soon as we’re done here, you can go in the room and see her.”

In a flurry of activity, Jennifer and Todd dumped Colin off with the rest of the family in the waiting room and headed for the post-anesthesia care unit, which housed a groggy Lauren.

A swollen but breathing toddler attached to steadily beeping machines greeted Jennifer and Todd.

“Aww,” Jennifer whimpered, clasping her hands together. Strips of white gauze were wrapped around Lauren’s head, and tangled — but recognizable — blonde locks stuck out in tufts.

“You guys get to hold this little bundle,” the nurse said, gingerly handing a loosely swaddled Lauren over to mom.

“She’s doing perfect right now,” the nurse encouraged after Todd kissed Jennifer’s head while she rocked back and forth with their daughter.

Jennifer and Lauren settled into a wheelchair that took them off to a private hospital room. Lauren was face-down in her mother’s chest, face smushed and lips slack.

“I know…” Jennifer softly consoled, stroking Lauren’s cheek and touching the bandages.