Monkey See, Monkey Do…

Posted by

Monkey See, Monkey Do…
The Story of Claire Torres and Her Cochlear Implant, Ivy

Camera Photos2 445Families typically learn from their pediatricians that hearing loss can affect their child’s ability to develop communication, language and social skills, but sometimes, a child’s hearing disability goes unrecognized. Claire Torres, a soon to be fifth grader and remarkable young lady, was confirmed to have hearing loss in her right ear in 2008. At the time, her audiologist and Otolaryngologist suggested that her parents continue to follow up with routine evaluations since her hearing in the other ear remained perfect. Because Claire’s learning ability and communication skills aligned with what’s expected of her age group, her family, friends and teachers remained unaware of the severity of her hearing deficiency. It wasn’t until Claire entered the third grade that her parents learned that she required further attention from a specialist. Knowing that preventing her daughter’s hearing from worsening was crucial, Claire’s mother, Lisa Torres, took her to see Colorado Neurological Institute’s member physician and cochlear implant surgeon, Dr. Daniel Zeitler of Denver Ear Associates. Little did the family know, their introduction to the world of cochlear implants would ultimately allow Claire to blossom into the outgoing, spirited jokester she is today.

For those who’ve never heard of a cochlear implant, it’s a small, complex electronic device that can help to restore the sense of sound to a person who has moderate-to-profound hearing loss. The implant is very different from a hearing aid. Instead of simply amplifying sound, the external portion of the device gathers acoustic sound from the environment, turns these signals into electrical impulses, and sends them into the internal portion of the device implanted in the cochlea, thereby bypassing damaged portions of the inner ear and stimulating the auditory nerve directly. In a nutshell, a cochlear implant is a technological miracle that brings the recipient from a world of silence to a world of sound. For Claire, this extraordinary device has instilled confidence, opened doors to new experiences, brought her closer to her peers and most importantly, given her an appreciation for the aspects of life that most take for granted.

Before coming to Denver Ear Associates, Claire had adjusted well to her hearing loss, which was evident through her intense passion for theatre and basketball. Despite her involvement in these social activities, there were times when her hearing loss made her feel disadvantaged and left out, particularly when she was on the playground or in the cafeteria. These specific environments weren’t conducive to single-sided listening, as noise would come from all directions, making it difficult for Claire to comprehend what her friends were saying. Like other children her age, Claire simply wanted to feel accepted by her peers, so she was open to learning more about cochlear implants.

On November 12th in 2012, Claire and her mother met with audiologist, Jennifer Torres (no relation), and Neurotologist, Dr. Daniel Zeitler to discuss the opportunities made possible by a cochlear implant device from MED-EL. Claire instantly developed a bond with “Dr. Z.” She was impressed by his monkey socks that he routinely wears for cochlear implant surgeries. His upbeat personality and sense of humor paralleled perfectly with Claire’s character. From the very beginning, this doctor-patient duo was the ideal match, and their strong connection helped the family feel at ease about the surgery.

Claire explains this initial meeting in her journal entry from the 12th:

Today, I met with Jennifer to do some testing and to learn more about cochlear implants. She showed me visual aids – what a cochlea looks like and I could touch, hold and play with the demo cochlear device. I picked out my color. I really wanted a pink but my parents made me pick a color that matches my hair – ebony. I’m glad I didn’t get pink because it would stand out more. I asked Jen if I could stick to the refrigerator and could I pickup paper clips with my head.

I met with Dr. Z and he told me the Do’s and Don’ts after surgery. He told me that I couldn’t play basketball for the rest of the season but MAYBE. MAYBE means to me that I could play in the tournament on Saturday, December 15th.

A child with a comical personality and wisdom beyond her years, Claire demonstrated her bravery with humor. Her biggest concern about the surgery was not being able to go on a field trip or play basketball for a “WHOLE” month. She was also a bit disappointed that she wouldn’t be able to hear with the implant until December 18th, her activation date. These concerns aside, Claire was ready for her cochlear implant. She even planned her outfit for the occasion, picking out a new button-up shirt, slippers and monkey socks to match Dr. Z’s.

On November 26, 2012, the day of Claire’s surgery, she wrote in her journal:
Day of surgery. Mom and I are going to the hospital; it is 5:14am. A benefit of getting up so early is that you can see all the beautiful Christmas lights. Today is a big day – it’s Noah’s (Claire’s brother) 6th birthday and he’s skipping school today. I am very thirsty but I can’t drink or eat anything. We got a really good parking spot. Millie and Blanco, my favorite stuffed animals, came with me. I am really hungry too! I want a hamburger and chocolate ice cream after my surgery.

Feelings: excited and nervous

Looking back at her surgery, Claire remembered the room being bright and cold. She didn’t care much for the “sleepy medicine,” as it smelled like a “Sharpie marker,” but it did the trick. After Claire was asleep, Dr. Z performed her surgery, implanting the receiver under the skin behind the ear and an array of electrodes in the cochlea. Claire was still drowsy from the anesthesia when she woke up, but she was pleasantly surprised to see that Dr. Z had put a matching bandage on the head of her yellow dog, Millie. This kind gesture brought her joy in a state of discomfort.

About two weeks after receiving her implant, Claire’s itch to play basketball grew. She attempted to persuade Dr. Z to let her play basketball with the following email:

Dear Dr. Z,

I am writing to you because I want to play basketball on Saturday the 15th. I looked on my calendar and it’s almost 3 weeks since surgery. I have not been doing the following things: Sky Diving
Rugby
Skiing
Snowboarding
BMX
Biking
Hockey
Wipe out TV show
Fear Factor TV show
Pro-Wrestling
Submarine Diving or Snorkeling
Boxing
Sneezing Contest
Fourteener

If I do not get to play this weekend, I will not be able to get into college. My career will be ruined as a Veterinarian or Pro-Basketball Player. You do want to be the coolest doctor, don’t you? If you let me play, I will be super-duper careful, I promise.Your favorite patient,Claire

Despite her persuasive appeal, Dr. Z encouraged Claire to stick to the initial plan. He replied:

Please feel free to write on your college applications that I am the cause of your ruined career as a professional basketball player and please tell all of your neighborhood dogs and cats that they will have to find a different veterinarian. I hope that this doesn’t alter your view of me as the coolest doctor around because if it does, I will unfortunately have to ask for your monkey socks to be donated to science.

Don’t be mad at me….forever. And you are still my favorite patient.

When Claire’s implant was activated on December 18th, she couldn’t have been more excited. At first, Claire struggled with differentiating loudness from clarity. She thought by turning up the volume, she would be able to better understand the voices around her. She also had some pain issues with loud noises like the banging of pots and pans, the car horn and her little brother’s voice. Even with these hurdles, Claire’s brain quickly shifted and adjusted to the device. Using MED-EL’s training software allowed Claire to get used to her implant, and trying different program settings or “maps” also helped her to find the right balance. The adjustment period took just three weeks, a very brief and impressive time frame to say the least. For most, it can take months to achieve Claire’s level of success.

In Dr. Zeitler’s experience as a surgeon, implantation for single-sided deafness is less common and less understood in comparison to bilateral surgery. He is amazed by Claire’s ability to adjust to the technological device. “Claire is one of only a small number of children around the world who have undergone cochlear implantation for single-sided deafness. Given the novelty of this particular treatment for this indication, Claire certainly took a leap of faith not knowing what the outcome would be and not having much data to reference pre-operatively,” said Dr. Zeitler.

Following Claire’s activation date, her parents asked that she give her implant a name to make it easier to discuss the device. They had found it too impersonal to refer to something that is part of their child as a CI, device or processor.

Claire explained in her journal on December 27, 2012:

I named my device Ivy. It is much easier to say than cochlear implant. My Mom said, “It is PART of ME now.” And I have to have permission to take her off.

With Ivy, Claire’s self esteem has sky rocketed. It’s almost as if Ivy is that little voice of reason in Claire’s ear, telling her that she is capable of accomplishing anything. Since having the procedure, Claire has participated in her school’s talent day and performed a “sassy” basketball-dance routine to the High School Musical soundtrack, both of which are experiences she might not have had without the help of Ivy. Claire even entered a picture of Ivy with dolphin stickers into a photo contest on MED-EL’s Facebook page, which she won. She enjoys being able to “bling” Ivy up with fun, colorful stickers and jewelry.

Claire and her family are so happy with their decision to go through surgery. As a family, they are fully confident that Ivy has and will continue to give Claire new life experiences and opportunities. When Claire goes to school, she no longer has to worry about feeling different or missing out. She explained, “Me and Ivy are stuck together for life. I cannot believe how smart she (Ivy) is. I’m lucky to have her.” Despite Claire’s young age, she has already developed a strong foundation of principles and values. She understands that overcoming life’s obstacles brings great strength and self-acceptance over time.

In the coming months, Claire will receive an additional device known as RONDO. She’s not sure what name she will give this new tool, but she’s excited to meet “her.” RONDO is the world’s first CI Single-Unit Processor. The device will have fewer parts and no cable, making space for sunglasses and other accessories. Claire will continue to wear Ivy, but she will interchange the two devices.

If you are a mother, father or caregiver for a child, Claire’s story is certainly an eye-opener. It’s important to acknowledge the fact that hearing disorders are more common than you might think. Even if your child performs well in school and exhibits “normal behavior,” it’s possible that he or she might be trying to cope with a degree of hearing loss. The sooner you catch a hearing disorder, the quicker your child can get the help and attention needed. Through organizations such as Colorado Neurological Institute, families are able to connect with other families experiencing the same or similar situations. The CNI Cochlear Kids Camp, support groups and other Hearing Program events are all intended to create a haven for sharing experiences and celebrating successes. Claire’s account and the hope-filled stories provided by other children continue to inspire CNI and the surrounding community. Such positive outcomes confirm that anything is possible with the right combination of patient care, education and outreach.

How to Get Involved with Colorado Neurological Institute’s Hearing Program: The CNI Hearing Program offers numerous outreach, support and charitable programs to help adults and children with serious hearing impairments. These include: CNI Cochlear Kids CampsSM World Hearing Network Cochlear Implant Assistance Program Baha Assistance Program Support Groups for Adults Teen Thing (Support Group)

If you are interested in learning more about the CNI Cochlear Kids Camp, support groups, research, and other Hearing Program initiatives, please visit www.thecni.org, or contact Tim Hermann at 303-357-5449 or thermann@thecni.org. If you’d like to make a donation to the CNI Hearing program, please contact Nancy Miller at 303-806-7415 or nmiller@thecni.org.

Written by

Comments are closed.