Not getting Cochlear Implants

Naticia - posted on 02/05/2013

My oldest daughter was born with profound bilateral hearing loss to the point that an airplane taking off would have sounded like a mere whisper. My husband and I took all of our options into account and chose the Cochlear Implant route. She received her implants at 10 and 20 months (she now has bilateral implants) and hears whispers and water dripping from the faucet a room away. She was deemed age appropriate for hearing and speaking at 2 1/4 and speaks so plainly that strangers have no idea she's deaf at all. She is now three years old and is reading!

Three months ago we brought a new daughter into the world, and she also has the same issue. She has had hearing aids for two months and will, God willing, receive her first Cochlear Implant even earlier than her big sister. Yes, it requires a lot of work. Yes, it is dangerous (what 5 hour long surgery isn't?). However, taking all things into consideration, I can say (without any hesitation in my heart) that I recommend getting Cochlear Implants!

Kimberly - posted on 01/03/2010

I have some mixed feeling about some of the posts on here ... I'm a deaf parent myself, and I went my whole school years without ANY HELP .. and I did just fine and speak incredibly well many people are often VERY SHOCKED I even have a hearing problem and it's much worse now than it was when I was in school.
I have now 13 yr old deaf daughter as well .. I actually had to fight to prove she even had a hearing problem to get her any kind of help or aides etc since you have to have MEDICAL CLEARANCE to get them for the kids, which I really find ridiculous, but I've had a really crazy battle her whole life, with the systems and schools and so on. My daughter was put in the deaf school after struggling not so much with her actual work but with getting the help that was legally hers to get they just wouldn't help her. That worked for a little while as I had moved to live closer to the school and was lucky enough my family lived not far from there, so we had a support system there as well. After a year and a half there we had to move back to where our real home was which is over 200 miles away, and she had opted to try to stay at the school, that went downhill fast. I felt, as did she that they were trying to pull my daughter away from my family. Not really so much ME, because i was deaf also. But it was like they were isolating her from the hearing world, which I found completely unacceptable myself given she and I were the ONLY deaf people on either side of her family tree! She was ( and is NOW) very close to her Dad and hearing siblings and pulled away from those too quickly. I ended up pulling her out of the school, put her in the deaf program here in town ( in which the Deaf school had made it difficult to do and made it a long LONG process ( took 2 weeks!) and she had been on the Honor Roll there at the Deaf school and she was also on the honor roll for 3 yrs straight in REGULAR SCHOOL! I push all of my children to do their best, and they give all they have got. How well they do is how well you see and push for them to do. That's how I feel. I ask my daughter at least twice a year if getting the CI is something she wants to do. As a deaf adult .. I wouldn't want to have it, just because I love my life. I can choose to hear some things or just enjoy the peace .. the peace is SO wonderful at times! :) It makes me feel blessed and lucky. Yes I know I'm missing out on some things and sounds, and my daughter realizes this also, but she doesn't want to have the implant either, she doesn't want someone cutting into her head and sticking this device in her brain. It's very scary, I realize it's safe and yet has it's risks, but the idea of cutting into my own head anytime it stops working, let alone the first time, and you're still basically wearing a hearing aide, it's just bigger and more pronounced I think, and not so pretty LOL ... so I felt it was my daughter's choice, because as it's been said before it's they're body and THEY have to LIVE with it the rest of their life! Yes I'm the parent and I should make the bes choice for my child, I've heard that for years also, BUT as a deaf person myself I would not want someone else not even my parents making a life-altering and changing choice for me like that, when it's not really my LIFE itself that is at risk. It's a CHOICE and there are options to still live a full and well lived life.

Evelyn - posted on 11/30/2009

Getting an implant is an extremely personal decision! Both my boys are implanted, but don't really use them. It is an option to try, but not a guarantee. Neither can use aids, but they communicate well through sign, and the older one has amazing English skills.

Clarissa - posted on 11/09/2009

I just read your post and although it's been awile since it was put on here...
My son was born with profound loss bilaterally. It was a hard decision to make and for us we decided to get implants for him as early as he could be implanted. I have to say that I totally respect whatever decision is made by a parent for their child! What is best for one family doesn't have to be the right choice for another. For us, we have two older hearing children and we want to give Evan the chance to communicate in any way that he can. Knowing that he qualified at such a young age we decided to go for it. As a family we have been learning sign since he was 3 months old and had local education...a teacher for the Deaf/Hard of Hearing and Speech work with him since 3 months as well. We chose Total Communication, giving him the tools to use whatever form of commuication that he can. He does sign some already and receptively responds to many. He was implanted at 10 months and activated a couple weeks before his 1st birthday. We have noticed many things already! In the past 2 months he has increased vocalizing a great deal and is starting to mimic patterns with already! We have heard a few different letter sounds and he is doing beautifully! If we had access to a larger Deaf community and had more resourcses for Deaf Education we might have chosen a different path, but for us this was the best thing for our family. I'm sure by now you have done a ton of research and have made many decisions! I wish you the best of luck and will watch for future posts!

Haugh - posted on 10/10/2009

Hi I just joined this site and saw that you are where I was 3 yrs ago. My little boy was 3months old when I was told he had profound hearing loss in both ears. My husabnd was overseas and I remeber feeling just like you. Praying that the hearing aids would work. The prayers worked my son did wonderful! We tried to teach him sign but he would not do it. He knows the signs yet he wanted to try and use his voice and them when we couldnt figure it out he would sign. When he learned to speak you couldn't even tell he had a hearing loss. He learned to say mama at 6 monthes I was thrilled he was up to 2 and 3 word phrases and then he stopped. I struggled with the thoughts of should he be able to tell me when he gets older or should I get it done. Now he is 3 and having a very hard time learing to speak. My husband and I started doing research I learned what they dont tell you. Did you know that children who dont get inplanted before age 3 have a harder time learing to speak, spell, and recognize sound all together? My son is three and I know that he will have his challenges now because of me waiting so long. But I will keep praying and I know that God will see him through just like before. I don't even know that you will read this, but when I saw it I had to at least try and help you out since no one did for me. I just want you to listen to your child and pray hard if your sweet baby shows you she wants to talk please listen. People will tell you there way they want you to go you sound like a good mother trust God gave you that baby because He knew that you would listen to her don't. Just remeber IF YOU BOTH decied on a CI the longer you wait the harder it is on her trust me I know. I know this might not reach you but if it does please let me know I have some great resouces to email you if you want.

Lisa - posted on 09/18/2009

Hi, just thought i would leave a message i am a deaf mum and i have a 2 1/2 year old daughter gracie who is deaf, she has hearing aids at the moment but is on the waiting list for a ci as the hearing aids do not pick up all the sounds she needs for speech. i have no doubt that if u want ur child 2 learn 2 talk ci are the way 2 go i was implanted 4 years ago this christmas and i don't no how i would of coped without them. the difference between me and gracie is she was born deaf i lost my hearing 9 years ago when i was 19. if u have have ant questions about the implamt im happy 2 answer. take care x

Golda - posted on 09/11/2009

At the end of the day the decision is yours. My son was implanted at 2yo, he is now 12. Over the last several months he's been having issues with pain and swelling around the implant site. Doctors now tell me that they have to "revise"/repostion the implant and suggest that I have the other ear implanted during the procedure as a back up. I don't regret getting the implant, it has helped tremendously with his education, he speaks coherently but his grammar is a little off because he speaks as if he is signing (he speaks and signs ASL). I don't think I will do bilateral implants because I dont see the benefit of it 10 years past the first operation.
CI is a safety issue to very active kids (ie, my son), just take precautions if you do decide to go with, and also encourage your children to learn ASL, its' part os who they are.

Good Luck!

Delani - posted on 08/27/2009

last time reponding?? I am not agaist CI, And I think it is great that the oral approach is working for you. I tried the oral approach only for almost 2 1/2 yrs. And I went from having a happy little girl to having a very angry frustrated and always crying child. Where I live they frown upon using ASL at all I have had to go through 2 mediations to get help in teaching my daughter ASL. by the end of the semester she was tested for both sign and verbal and both had marked increases in level of function. In our school system as soon as you put CIs in them they want to remove the use of ASL support, and I do not want to send my 5 yr old off to live at school all week only to come home on week ends and moving is not an option for our family. I have now done over 3yrs worth of reseach on whether to implant or not, it was not a stap decision. I was also born with a disability and my parents left the decision up to me when I was older whether or not to get my disability "fixed". If it was life threatening of corse we would make it on our own... but for us it is not life threatening our almost 5 yr old is back to being mostly happy(as much as any 5 yr old is) she has many friends and at church all her classmates learn there Bible verse in sign as well as speach. my Daughter Kindergarden teacher has taught the last 3 yrs sign launguage basics and the children think it is so cool to come up to our duaghter and share what they know with her. She understands over 250 words and can read quite well.. reading was our biggest fear and she has done great by leaps and bounds... It is not that I am against CI's I personally think that a child does not have the cognitive development to be able to learn how to decifer between background noise and voices that they will have when they are older... that is just what I have gathered from the reseach that I have done into it... In my first post All I said was my opinion and resources that could be researched for the parent. I just don't like the way it is portrade by the medical teams(at least in my case) that you are causing harm to your child if you don't get the CI. for us our children are not broken, yes we use hearing aids, yes we are stimulating the optic 8 nerve. but we are willing to wait to see what further improvement will be made in the future instead of implating them today... And I am just as overjoyed when my daughter uses ASL as when my hearing children use speech. I was estatic when my baby used the milk sign and the want sign for the first time... hope this helps clarify things and not make them worse...

Janice - posted on 08/21/2009

I'm glad the ASL option is working wonderfully for your child and your family! I think ASL is beautiful...I love the fact that the ASL community is so tight and bonded and there for one another! I too utilize ASL with my children more so now that were implanting but, it isn't their primary mode of communication. I'm all about versitility and options. In my post I was simply giving facts on why us parents who choose to implant have this sence of urgency. It is FACT that the earlier you implant a child the higher their success rate! Unfortinately its not the majority of Deaf people (who only utilize ASL) that have these high paying jobs. I too want to raise independant self supporting individuals with high self esteem and KNOW who they are! the best way for us to achive this was to have our children in a Auditory Oral School from the very beginging and utilizing both hearing aids, fm systems, and cochlear implants. We also have our children in sports and are very active in our community! This certainly hasn't been "easy" as this is very costly,...Financialy and emotionaly. I have had to quit my job due to me traveling over an hour away daily to the best school that will help us meet our childrens needs..I also have many appointments and I work very hard at home with our children in the academic area.



I can't thank the teachers, speech therapist and audiologist enough for giving my children the gift and oppertunity that once seemed impossible. Hearing my son sing "my girl" or "happy birthday" or just telling me why he's upset or happy for that matter... or my 2yo daughter who say's "thank you" when a stranger gives her a baloon, or when she feels the need to yell at her brother "stop, no it mine" or my son walking up to the new kid on his soccer team and saying "let's play together" brings tears to my eyes. I love hearing their voice! My sons academics are AMAZING! I know he's truely gifted and I owe this to us..his "parents" making decisions and having the sence of urgency.



Any communication is good communication and no matter what mode of communication we choose as long as we stay in tune with whats going to help our children meet their needs..... then so be it. I understand that this is a controversial issue but it doens't have to be...I think my children should be just as welcomed into the Deaf community having an implant, hearing aid or not....at the end of the day the devices come off and they are DEAF.



In my post I was only giving FACTS, and defending my chioce to implant my child.

Delani - posted on 08/21/2009

just so every one knows I the Lady I was speaking of who is now over 21 so the state does not help with the cost of the surgery to re-implant, and many insurances will not cover hearing loss proceedures. Also I do not like the scar tacktick saying that if you don't implant bfore a certain age that all is lost... I have actually spoken to about 10 people who were born Deaf and were not implanted until they were at least11yrs old or older... Omgosh they can talk. imagine that. And as for the lack of employment?? I know of quite a few people who have better paying jobs than I do and they are completly Deaf. I also know of some people who depend on SSI. but you have that in the hearing world also... My goal for my children is to raise independant self supporting individuals who are proud of who and what they are... One of the teachers in our public elemantary school has been teaching beginner ASL to her kindergarden class for the last 3yrs(as soon as she found out our daughter is deaf) many of the kids get a kick out of stopping our daughter and talking to her, and our daughter loves it to.. the more sign we have given her the more she also talks verbally... I do know my children well and I am being "The Parent" by chosing not to implant yet for our daughters. Also remeber to ask yourself the question are you doing what you think will be easy for your family or for your child??

Janice - posted on 08/12/2009

About me! I am a mother of 3! My oldest son is 51/2 hearing, my second son is 4 dhoh sever/profound, and my daughter is 21months old also dhoh mod/severe.



The window of oppertunity to learn spoken language is so small! Before it was said that the window was from birth to 5 now studies are showing its more like 0-3! Theres risk's in most of the decisions we make as parents!



Waiting around for my child to have an input can cost him learning spoken (which the majority of people use), it can cost him his independance, (having to have an interpretor in class or any where for that matter) This may cost him his self esteem(not be able to listen to music or attend school dances or be in a mainstreamed class) this could also cost him NOT being able to communicate with not only his peers but his family! I want my children to FULLY understand what's going on at any given time!



My children will learn ASL eventually maybe as a 2nd language in 6th grade..There's no window that closes on this oppertunity but, learning spoken language on the other hand that oppertunity closes and it closes FAST!





I also looked at the statistics when deciding to implant or not...By the time a dhoh child who utilizes only asl reaches the 12th grade they read at a 3rd grade level! Many fail at least a grade in school and have behavior issues. Also, parents who choose to utilize only ASL only learn to a preschool level.



I would NEVER send my kids away to school so they would miss out on the deaf culture as well...This decision wasn't easy for us but, I know our son will definitly gain all the benifits from "us" his "parents" making a informed decision for his future!



I can't/don't want to imagine what this world would be like if parents waited for their children's imput to make decisions. We're our childrens PARENT'S that's our job to make decisions for their well being!



Although my post seems biased...its fact based! Be well informed before making any decision!

Melissa - posted on 07/22/2009

To get a CI or not get a CI, that is the question... as a hearing parent of profoundly deaf son I have had to tackle this question... My son is now 11 almost 12 & when I was given the information on the CI he was around 2 or 3, he was over a year old before the hearing loss was even diagnosed & had been getting ASL before the CI was even brought up to me....



I look at it this way, in the time that it would take him to learn a word with the CI, to hear it, correctly interpret it & repeat it orally he could learn at least 5 words in ASL, I chose to keep up with the ASL, to keep his mind at an optimum, for him to learn as many differant concepts/words as he could than to burden him with learning at a much slower rate. This was MY choice, and I wish that he could have told me what he wanted at such a young age, but as it stands I'm happy with the choice & feel that my son has a better oppurtunity to learn & think with the option I chose. He has patience with his MANY family members that don't know how to sign anything but 'I love you' 'yes' & 'no' & seems to manage to communicate with them well. His reading level is progressing & at the cusp of puberty seems to be very content with his world as he sees it.



I urge you to make the choice that feels right, that is all any parent can do.

Heather - posted on 07/18/2009

I think that it is your choice. My daughter just turned eight last week and she has a profound hearing loss in the left ear and a severe hearing loss in the right ear. The doctors have wanted me to do a ci from the beginning but as a hearing person who has never had to deal with being deaf or hearing loss, I do not feel that it is my decision to make. I have talked it over with my child on several instances and since she is living the "deaf culture", I let her know anytime she wants to have a ci done i will support her and if she doesn't i will support her as well. Many deaf people/hard of hearing people do not consider themselves as "needing fixed", simply thats how they are and they are proud of it. My daughter goes to a deaf school and many children there have the ci and a lot of them don't wear it, they do not want to hear. I think CI's are good and sometimes they work great but you should know before hand that it is not garunteed and it is your choice, don't let other people make the choice for you. You need to do the research yourself and do what you can live with.

Kimberly - posted on 07/09/2009

Heather,

Caitlynn had a severe/profound loss in her right ear and a profound loss in her left ear. She couldn't hear hardly anything even with aids she was struggling. I know putting a child through a surgery is difficult and stressful. But I think parents need to step back and remember that they are the parent. In the long run parents know what is best for the child. As Caitlynn's parents we made the choice to implant her bilaterally b/c we wanted to allow her to experience everything to the fullest. I would make the same choice again. I have meant several people who are completely deaf and give the opportunity, when they were younger, they would have had the surgery....but they have become adjusted to their own lifestyle, they did now look down on or frown upon Caitlynn for having aids or that she was in the process of getting CI's. I think that some feel that the technology is there and if it works great.

You can still teach your child ASL and have them implanted, that is a choice you have for her. Caitlynn lost her hearing when she was 3.5 years old and was already speaking. I just want to remind you that not everyone knows ASL, there aren't schools everywhere to handle a deaf child and the work force in this country is set up for hearing individuals. Research, talk to doctors, audiologist, parents of other deaf, aided, and CI children, and adults that are deaf, aided, and have CI's if you are that conflicted.

I wouldn't change our decsion for anything.

Heather - posted on 07/09/2009

Lani gets her hearing aids this friday so we are praying that they work. The audiologist repeated her baer test and showed an even more severe loss than they first thought. She now has at least 80% loss in both ears. The audiologist doesn't think the hearing aids will really help her but I guess only time will tell. I have been doing a lot of research on the ci and still am going back and forth on what to do if her aids do not work. I feel the same was as Delani in that I want her to have a choice in this and be able to decide for herself. However she is only three months old and I know there is only a window of opportunity to get this done. I took ASL in college and learned a lot about deaf culture/communities. A lot of what we learned from some of the deaf speakers and our teacher was that a lot of people in the deaf community look down upon CI and rarely accept people with CI into the deaf community. They obviously feel that the do not have a disability and having a CI is saying that being deaf is a disability. (I don't feel it is. I think Lani is exactly how God wanted her to be and I wouldn't have her any other way but want to do what is best for her). My concern is that if I did go ahead with the surgery and it doesn't work as well as we had hoped (which our audiologists said may happen with her profound loss) then she may not be accepted into the deaf community either. Its such a hard decision and I honestly do not know what to do!

Kimberly - posted on 06/27/2009

I think it is a harder decsion than most parents think, to implant or not implant. Our family looked at it this way, how many people know sign language.....how is she going to function in today's world if people can not understand her and she can't understand them. Our daughter was diagnosed with a severe and severe/profound loss in her right and left ears at age 4 (yes she could hear until she was around 3.5 we think). She wore hearing aids for 7 months before she was bilaterally implanted in May of 2009. Why we did it is very simply. We wanted her to experience life to the fullest, we didn't want to take sound away from her. It is a difficult decsion to make. You need to talk to other parents, audiologist, doctors and anyone else you can that knows the benefits, failure rates of CI's, ect. My daughter was activated on May 26th and she heard. She could tell who was talking. By June....3 weeks later.....she was in the normal range of hearing already. Her speech has improved and so has her behavior, all because she can hear.



Delani-

My daughter also goes to an Oral Deaf School. Most of the children in attendance wear at least one CI. I have not heard of any of them failing or needing surgery. I recently talked to a women whose son's CI did need replaced. I would take the risk over again with our daughter in a heart beat. She had the best surgery team there is in our state doing her implantation. We have no worries about the implant. And I'm sorry to hear about the little girls also, however, the CI companies do offer replacement if the CI is defective, a warranty for so many years.

Portia - posted on 06/15/2009

Quoting Delani:

Portia- hope you actually talked to other parents that have children with CI before you did that. out of the 8 children I know who have CI 7 of them have to have an interpretor still. out of that seven 6 of them are over 9 yrs old and and they were all implanted before they were to. It is the childs head they have to live with it for the rest of there lives I have also talked to many adults who had it done and wish that they never did, it is not a garantee that it will work, I know one girl that had it done to both ears and the CI broke and she doen't have the money to have another surgery so she is now completly Deaf and there is no going back. I hope the beast for you and your child.

Delani-

My son goes to a oral deaf school where plenty of kids have CI's and that are very sucessful with it. We have been doing our research and talking to other parents for over two years now and we are more then happy with our decision. It is not always the case that these kids need interpretors, with the proper assistive technology such as an FM system they will be succesful with hearing and following along. you will always hear of the " I wish that I never done it" type of case, but that is only a very small percentage. I'am very sorry to hear about that poor little girl... maybe she was too agressive in sports? Now that I know is a very odd case! and yes there is going back. If something goes wrong with the implant you can have surgery to have it removed or replaced. Sorry that you were miss guided on that one! Yes us parents do take risks and down falls with choosing this for our child but It is important for us to know that we did what we thought would be best for them. If for some reason our kids grow up and decide to be completly deaf then all they would have to do is drop the voice/implant/hearing aids and begin to sign.

Delani - posted on 06/12/2009

Portia- hope you actually talked to other parents that have children with CI before you did that. out of the 8 children I know who have CI 7 of them have to have an interpretor still. out of that seven 6 of them are over 9 yrs old and and they were all implanted before they were to. It is the childs head they have to live with it for the rest of there lives I have also talked to many adults who had it done and wish that they never did, it is not a garantee that it will work, I know one girl that had it done to both ears and the CI broke and she doen't have the money to have another surgery so she is now completly Deaf and there is no going back. I hope the beast for you and your child.

Delani - posted on 06/12/2009

Both are girls who are deaf qualify for CI. but we believe that they should have an imput in it, We found a wonderful Audiologist who was the only one who did not push us in the CI direction, my 4 yr has very similar hearing loss and my 9month old is almost totally deaf. my best advice to you is to start learning and teaching your daughter asl/sign language, if you google deaf baby of hearing parents in (whatever state you live in) it will give you some local resorces. I will tell you that normally most early on programs have teachers in them that believe in the oral approach, we believe in the biligual bilanguage/ you can go to the Deaf Biligual Coilition also. they have some good links from there websight, you can also see a brief letter that they posted of mine, will tell you what we have gone through. the Audiologist told us that the HI will keep the optic 8 nerve stimulated and that is the most important thing, also are 4yr old the more ASL she learns the more she verbalizes also..