12.1.12

Cochlear Implants

Ladybug's hearing loss has been a progressive loss. She passed the newborn screening test. It wasn't until a year in a half later, when she was re-tested, that the doctors became concerned. It appeared that Ladybug had a sensorineural hearing loss and it was progressive. This could be a result of many reasons. We know from genetic testing, that her hearing loss is not genetic. We do know, being an extremely small premature infant comes with many risk factors. One of which is vision and hearing loss.



It was right after her second birthday she was fitted with her first pair of phonak hearing aids. She loves her hearing aids. In the morning, if we do not put them in right away, she will ask for her "ears." The hearing aids help amplify the sounds she can hear. But because of her severe to profound hearing loss, there are some sounds she is just not picking up. Most of them are in the high frequency range. Here is a demo of what hearing loss sounds like.




It appeared this fall during a typical audiological and ENT appointment, that Ladybug's hearing was becoming progressively worse. Her doctor at UNC wanted for us to come back in three months. It was at this latest appointment her doctor informed us, he would recommend a cochlear implant for her right ear.

We are in the process of taking this information and doing some research on children who have one cochlear implant along with one hearing aid. If Ladybug had an implant, she would be hearing naturally with amplification in one ear and unnaturally but with the sound field she is missing in the other. We want to make the best decision for her. We understand that making the decision sooner then later, will only benefit her, if we feel that it's the right thing for her at this time.

Any advise from parents of children who have had both a cochlear implant and a hearing aid would be greatly appreciated.

14 comments:

  1. My husband has been experiencing hearing loss. At first we thought it was his job. (heavy equipment operator) But the loss is mainly one ear having the biggest shift. audiologist, ent, and now we are seeing a neurologist. (mar 2nd) His MRI showed increased cerebral spinal fluid in the ventricles in his brain.

    Thanks for linking so I could hear what he experiences in a restaurant. He gets so embarrassed. Also he couldn't hear the AVIS car rental person... and he nodded himself into $500+ worth of extra rental car insurance. That seems like a crime to me. So unfair. They should be ashamed.

    I hope all goes well for your sweet Gwenyth Rose... I have followed your hubby's blog since she was born... maybe before.

    ToOdLeS.

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  2. I am hard of hearing, I've had hearing aids since I was 3 years old. My parents raised us to be hearing, sending us to public school with an interpreter and putting us in speech therapy 2-3x a week all the way through school. I highly recommend doing whatever you can to make sure your daughter can function in the hearing world as an adult. So many of my deaf friends were almost "babied"(for lack of better words) and sent to a deaf school, and taught only ASL as means of communication. Those friends, as adults, have minimum wage jobs and barely make ends meet each month. Not to say that there aren't a lot of successful deaf women/men out there, but my friends don't fall into any of those categories. If what she needs to Function well in a hearing world is a CI then, I say go for it. She deserves every opportunity you can afford to give her. She's so blessed already to have you as her mommy! I know you and Nathan will make the right decision for her, as you always have through her courses of treatment. I hope that all makes sense. I tried to keep it short, but you and I are friends on facebook if you want to contact me and ask any more questions!

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  3. Tricia, do you read Ellyn's family blog about called Profoundly Seth? http://www.profoundlyseth.com/

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    1. Thanks for the suggestion Jennifer. I will take a look at it!

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  4. I was going to recommend "profoundly seth" as well.

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  5. My daughter passed her newborn hearing screening also. At 3 years old she was diagnosed with not only a hearing loss but a progressive loss. She was fitted with Phonak hearing aids. At the time it made a big difference. In August of 2010 she received a cochlear implant at UNC. It has been nothing short of a miracle for her and our family. It was a big leap to decide if the CI would be right for her. As difficult as this decision was, it is one I will never regret. She currently wears the hearing aid in the other ear. I wish your daughter and your family all the best.

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  6. Both of my kids have progressive hearing loss (and wear Phonak HAs). CIs are always hovering 'out there' and as soon as their loss is at a place to warrant it, we'll definitely go that route. Hope all goes well for you through this transition.

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  7. Sorry, but I have no advice to offer regarding Cochlear implants, however, I think the more informed you can be about a big change, the better the outcome will be. I did come across this story about a woman with CF who had twins! (via surrogate), and also received a lung transplant! She reminded me a bit of your story! Thought you would enjoy watching the brief video about her story.

    http://mytricuspidatresia.blogspot.com/2011/04/inspring-story-about-my-cousin.html

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  8. i enjoy hearing about your sweet little girl. i'm sure she's doing some wonderful things!

    these 2 blogs might help - both are (obviously from the name) written by parents of micropreemies, and both have a young child with an implant. maybe you can contact them and ask them some questions?

    http://www.ourmicropreemietwins.com/

    http://micropreemietwins.blogspot.com/

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  9. My son wears bilateral cochlear implants, and has from the age of 8 months. I think it's important to make sure that your daughter has *meaningful* access to sound. There are many children that do very well with one CI and one HA, as it provides a great mixture of being able to hear the speech sounds, while still getting the benefit of "natural hearing" with the HA. I would recommend checking out www.livelaughlovefamily.blogspot.com (Christian has one HA and one CI, although he is getting his second CI soon). Please feel free to contact me if you have any questions on the CI, or check out our blog at turnonmyears.blogspot.com

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  10. I am profoundly deaf and I have bilateral cochlear implants (left ear at 5 years and right ear at 20 years). I have tried hearing aids in right ear but didn't work for me. The earlier Gwyneth gets implanted, her chances are much higher. My parents regretted not getting me implanted earlier. Please e-mail me at craslin617@yahoo.com if you need additional advice.

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  11. Very similar with our son. He passed his new born hearing test. At two we suspected a hearing loss because he wouldnt turn to load sounds and had no words. Tests showed he was moderated to severe at that time. We rushed for hearing aids.This summer we traveled to House Ear Institute for more tests and now he is severe profound in both ears with AN And just turned 3.We are rushing to get C.I's mostly in part because we meer such beautiful families at the JTC summer clinic w kids who were amplified correctly and had great speech. Meet young adults as well. Even kids w AN ..most..where you would never know they have/had hearing loss unless they told u or u noticed their C.Is. The sky is the limit. We are a hearing family and live in a community where you find very few who sign. We are confident that if he can hear it..he will speak it.. Of course we are not unrealistic and know it will take allot of work for him to catch up but we are commited ti work hard and areinspired by families who now look back and are so happy they made that CI decision. Plus I hear it can be less mainetance than hearing aids. Have to note...because our son is 3 we are stepping up with more visual aids, experience books as we use basic ASL so he doesnt get frustrated..however listening and spoke language is the primary communication goal.AG Bell has a great directory if Auditory Verbal Therapists. We live in Hawaii and skype w ours from Canada. So blessed our guy was born in todays times. Hope I helped in some way. Good luck and as one 4 year old CI kid said to us so beautifully. Dont worry everything w be ok.

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  12. Maybe in NICU antibiotics to help her grow caused Ototoxicity: meaning

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