To Implant or Not To Implant a Child Who Has Never Been Amplified

Do you or do you not give the okay for a cochlear implant to a child over age 7 who has never been exposed to any form of amplification? Good question. My answer: NO. I spoke to an audiologist at the Gala Dinner of the NHS 2008 Conference and her answer was a resounding "Maybe." The gentleman sitting next to me, who worked for Advanced Bionics agreed with me.

We were discussing the case of a fourteen year old boy who really wanted a cochlear implant. He had excellent speechreading skills and signed, but had never worn hearing aids. His parents and this child, who really wanted a ci, approached this audiologist. Their reasoning for requesting the ci was not because they believed it would be an "instant fix," rather, the boy wanted to be exposed to sound. He wanted to know the "sound of sound." He wanted to be aware of background noise in the street, in restaurants: he wanted to "hear" music.

The audiologist assured me that the parents were provided with reasonable expectations, resources were provided and they were told again and again that their son would not acquire speech as he had never had access to the spoken word prior to the ci. I asked her if the parents had been given the contact information of other parents who had lived the same experience. She said, "No."

The parents told the audiologist again and again that they did not expect their child to speak...they were not expecting a "miracle."

I looked at the audiologist skeptically. Implanting a child who has never heard at age 14 will only be a delusion for that child and the family. That family, no matter how many pamphlets or how many doctors tell them that child will not speak...HOPES that their child will speak or they would NEVER go ahead with implantation on a fourteen year old Deaf child who signs.

The child received a cochlear implant.

Apparently, although the child is unable to decipher sentences and cannot speak, the child says that the ci assists him in speechreading and provides him with a certain tranquility with regard to environmental cues.

And the parents...???
They would like to know why their child still isn't speaking.

NHS 2008 - My Speech

Here's my speech! I will say this - at a certain point, I started shaking, like a physiological reaction or something. I began fairly calmly and suddenly, I got the shakes. Luckily, I started the powerpoint presentation at that moment, so I managed to pull it back together, but it got a little sticky there for a minute. I don't know that I followed it word for word, but the jist was this:

INTRO:
Good Morning. My name is Jodi Cutler Del Dottore. I am an American Mom living in Tuscany. My 11 year old son Jordan was born profoundly deaf, wore hearing aids for eight years and three years ago was implanted in Pisa by Prof. Stefano Berrettini with Cochlear’s Nucleus 24. His first processor was an Esprit 3G, and he currently wears a Freedom. All of our expenses have been covered by the Italian National Healthcare Service.

The cochlear implant changed our lives. From the moment of activation, Jordan flew, grew and found his voice. Because he found his voice, I was able to raise mine regarding our experience. My father and I wrote the book RALLY CAPS, and incorporated a strong deaf character with a cochlear implant just like my son, because every child has the right to find himself in literature. RALLY CAPS has been endorsed by Cal Ripken Jr., Brooks Robinson, and Curtis Pride, the only Deaf Major League Baseball baseball player. It was published in the United States and has just recently been published in Italy. At the book presentation two weeks ago, I invited the Medical Professionals involved in helping our child, each and every one of them not only attended the presentation, but they spoke.

The following is the dedication in the Italian Version of Rally Caps to all of the medical professionals and teachers who have assisted us in raising Jordan’s voice:
Placing your child in the hands of other people and having to trust these people with your child is the most difficult thing for a mother. When life requires that you ask for the help and support of persons outside of the family, you suddenly find yourself in an extremely vulnerable position. Finding professionals willing to offer all of their efforts and competencies, who moreover demonstrate the ability to love your child in such a way as to contribute to his growth is…extremely rare.

*Slideshow*

I travelled ten hours, changed trains four times and sweated my way to a hole in the wall of a hotel room with a bathroom in the hall to provide you with this message: There is NO greater ally in making your job a success than the Mother of the Deaf Child you are assisting. I am here today, based on my experience here in Italy, to provide you with a Mother’s perspective.

PEDIATRICIANS:
Jordan was born in Baltimore and was extremely alert and obviously intelligent. There was no newborn hearing screening program at that time. Because Jordan was so intelligent, we questioned our pediatrician numerous times regarding his lack of language expression, he wasn’t babbling at all. Each and every time, my pediatrician called me neurotic… Motherly piece of advice number 1: LISTEN TO A MOTHER’S OPINION, THERE IS NO ONE WHO KNOWS HER CHILD BETTER.

As an American Mom thrilled to be living in Tuscany, I jumped off the airplane with ten month old Jordan slung over my shoulder ready to dive into some Chianti and pecorino cheese. One month after we settled into our new small town Grosseto lifestyle, we took Jordan for his first check up with our new paediatrician. Dr. Giovanni Lenzi performed a standard Boel test which involved distracting Jordan with one hand and ringing bells with the other- to which Jordan had no reaction. We were sent to Florence where they performed an ABR that indicated Jordan’s profound bilateral sensory-neural hearing loss. However, try to imagine the scene in that office...

AUDIOLOGISTS
When this audiologist came to speak at my book presentation a week ago, she commented on how different I was compared to that first day that I met her. I was a 25 year old American Mamma wearing cut-off jeans shorts, very broken in tennis shoes who didn’t speak a lick of Italian. What I didn’t tell her, because the most important thing in our relationship was the fact that she loved Jordan, was how angry she made me the day she gave me that news of my son’s deafness. She looked right through me…and spoke to my mother in law. And when I intervened by means of my husband and said, you need to talk to me, I AM THE MOTHER, she began calling me “dear.”

Motherly words of wisdom number 2: When you give a parent news of their child’s hearing loss, look them directly in the eye and never look at them with pity. If that mother is Hispanic or deaf, make arrangements for an interpreter to be present because the news you give that mother will change the rest of her life.

SPEECH AND LANGUAGE PATHOLOGISTS
Armed and dangerous with hearing aids, next stop Auditory-Verbal Therapy four times a week. Advice Point 4: This one’s for the Speech and language Pathologists, and Auditory-Verbal Therapists: Encourage that Mom who now assumes a new role as Mom/Teacher, focus on the positive progress made.
Imagine your typical playground scene, it is natural for a mother to teach her son right from wrong, how not to climb up the sliding board or not to push the child in front of him...it is not natural to have to shove language down your son’s throat "Oh, look, there's a toy train, can you say Toot Toot? Oh, look that little girl has a toy car, Brrrrrooom, brrrrooom!" This dual role of teacher/mother blew me away, I am a teacher, but I have Never had a student as stubborn as my son. My speech therapist explained that my son’s temper tantrums were due to his frustrations regarding his inadequacy in expressing himself, he threw a lot of temper tantrums, so he must have been extremely frustrated.

It was my son’s frustration and the fact that he was falling behind socially that led us to choose the cochlear implant.

COCHLEAR IMPLANT TEAM
After a couple of opinions and research we found Santa Chiara Hospital in Pisa where Dr. Francesca Forli answered every single one of my fifty questions calmly, objectively and sincerely. I had found my implant team. Prof. Stefano Berrettini performed the Implant Surgery leaving Jordan’s residual hearing intact. He provided me with his personal cell phone in case of emergency and called a couple of times to check on Jordan’s progress, note Jordan’s operation was the day before Christmas. I am not asking you to give up your personal lives for your patients, however it might be a sort of a human touch to delegate a phone call to a member of the implant team to find out how that child is doing…and how that mom is doing. A calm mother means a calm child.
Motherly request number 5: Go above and beyond the call of duty every now and then, it goes a long way in establishing a collaborative effort with the mother of that child, which will only make your work more successful.

The cochlear implant enabled my son to become independent. Our journey has not been easy, but it has been extremely rewarding.

SUPPORT NETWORK
After spending ten years without support, I found the Pediatric Cochlear Implant Circle a community of over one thousand parents at various stages of the cochlear implant journey. Some parents use ASL as a bridge or in conjunction with spoken English...other parents strictly use the Auditory-Verbal approach. We exchange information regarding the latest technology and offer psychological support having been there and done that. I then joined the blogging community, which has led to a productive dialogue with the Deaf Community. Hearing mothers of Deaf babies with CIs are making a difference in opening minds within the Deaf Community.
Mom’s Final Request: Provide that Mother with resources to help her through the lifelong journey with her deaf child.

I would like to share a little poem by Shel Silverstein entitled
Listen to the Mustn’ts

Listen to the Mustn’ts, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.

We are an example that Anything is possible. Empower that mother by validating her concerns, looking her directly in the eyes when you speak to her and providing her with resources that offer support and guidance... and you will save that child.

AN INFORMED MOM IS A POWERFUL MOM

For ten and a half years I did not know that yahoo groups existed. The last nine months of reading and sending messages, exchanging information with other parents living my same experience at different points of the journey has made me a stronger and better mother. Yesterday, we went to Pisa for Jordan's second mapping of the NUCLEUS FREEDOM. We sat down at the table: the audiologist with her computer, Jordan next to her, Luca behind Jordan and I was seated across from the audiologist. After hooking his processor up to the computer, she began making adjustments, but she didn't ask specific questions and I started getting antsy. Do I open my big, fat mouth or stay silent and let her do her job? Well, I am just not a patient person and my kid's hearing was at stake, so of course my aggressive self took over and I began firing questions. Another important aspect is to know your kid, observe him and his behavior, obviously that was the main reason I started collaborating with the audiologist. We worked on adjusting the level of background noise, by concentrating on sounds in the room like the fan, "Jordan, is the fan loud or soft?" "Is my voice louder or softer than the fan?" "Can you hear your own voice?" "Is it louder or softer than my voice?" etc. Then, I asked her if she did the Ling Test? She said she didn't know what the Ling Test was, I thought maybe it was an American thing, so I asked her to repeat some consonants and vowel sounds. She began going through the consonants like this: "ABBA- AKKA-ADDA-ALLA-ASSA" but when the consonant is attached to the vowel "A" it's easier for Jordan to distinguish as opposed to when the consonant is alone or attached to the "ee" sound. So, I started in an I'm-really-not-trying-to-do-your-job way, more like an I'm-a-proud-member-of-the-Pediatric-Cochlear-Implant-Circle-and-I'm-informed kind of way to do some Ling testing that you can see here with Nicole: To watch video either double click to go to youtube or deactivate music on the upper righthand side of the page

BECAUSE ANOTHER MOM FROM THE CI CIRCLE HAD SENT ME THIS VIDEO! AND ALSO BECAUSE I HAD SEEN ABBIE'S VIDEO OF HER ACTIVATION AND THE QUESTIONS THAT HER AUDIOLOGIST HAD FIRED ONE AFTER ANOTHER AT HER!

THANKS AGAIN, ABBIE, YOUR VIDEO HELPED MY SON!
At the conclusion of the mapping I asked the audiologist if she had made a lot of significant changes in respect to the old one, and her response was, "Yes." We also made certain that the volume feature was adjustable for those "extra-loud" school days. The FREEDOM PROCESSOR allows for four maps. P1 is his base map, P2 uses the AUTOSENSITIVITY PROGRAM, P3 ADRO and P4 is the base map on a higher level. She allowed me to download the new maps on my husbands computer key-drive (whatever you call that thing) that he obsessively carries with him, thank God! I like having copies of Jordan's maps just in case.
We said our goodbyes and headed for the Leaning Tower of Pisa. Given that the hospital is a three minute walk from the Tower and I spent a lot of time there breathing during Jordan's surgery, I kind of always have to visit Piazza dei Miracoli (Miracles Square- highly appropriate) every time we go for an audiological visit. Jordan got a foot long hot dog, had the man cut it in half because he only wanted mayonnaise on half of the dog and nothing on the other half and a can of peach tea. I watched all of the Japanese tourists-not many Americans-doing the typical Leaning Tower of Pisa pose where they contort their bodies and arms to make it look like they're holding up the Tower from falling, one of the most hysterical things ever seen and consistently reproduced!



I've become so Italian:)