Want to talk to any parent who has chosen cochlear implants for their child.?

Question

We have a newly diagnosed deaf 14 month old baby girl. She has evidence of auditory neuropathy in the left ear, and sensorineural loss in the right. They are suggesting cochlear implants. I had read LOTS of info, and feel pretty up to speed on how everything works, but would really like to talk to someone who has been there. We have upcoming appts with an assessment team, and I just need to get as much info as I can before I go, so I can have my questions ready to ask when I get there. I would also appreiciate any input from medical professionals who work with kids that have CI. I understand that there is a lot of therapy involved, but how are these kids doing? How long are they in therapy, how is their speech. etc. I know every child is different, but I need to know a rough idea of what to expect. Thank you so much for taking the time to read and respond to this. I really appreciate it.

Answer 1

i don't have an answer for you i just wanted to read this. sorry you are faced with a difficult deceision. i can only offer advise to you. so here it goes. i have had many ear problems growing up. very painful. i can no longer hear in my left ear. i wish everyday i could hear better cause to is hard to communitcate when you always have to say WHAT. i can no longer tell what dirction sound comes from, very frustrating. i think if you have a chance for your child to hear birds sing, your voice i would give that chance to my child. i wish you all the luck. my child had heart surgery 2 years ago and it was very hard to go through with it, but she is better now.

Answer 2

I don't have any experience with your situation but I wanted to give you some encouragement anyhow.  Personally I think cochlear implants are an amazing advancement in technology and would use them if I were in that situation.  

Your baby has some residual hearing and she is really young, which means that she should have a shorter therapy and treatment time.  It won't take her as long to sort out and understand sounds as it would an older child.  I did some looking in Wikipedia (not the best source, I know) and found the following information on recovery times.

"In the case of congenitally deaf children, audiological training and speech therapy typically continue for years, though infants can become age appropriate in a matter of months. The participation of the child's family in working on spoken language development is considered to be even more important than therapy. The family can aid development by participating actively in the child's therapy, making hearing and listening interesting, talking about objects and actions, and encouraging the child to make sounds and form words." http://en.wikipedia.org/wiki/Cochlear_im...

I'm not sure if a 14 month old would be considered a child or an infant, but this makes it sound like she would have a pretty short recovery.  Good luck with everything!

Answer 3

My son was evaluated for auditory neuropathy.  He didn't have it.  Did you already do the ABR (auditory brain response)?  I don't know where you are or where your assessments are but we went to one of the top specialists in the country.  He is Dr. Thiery Morlet at A.I. Dupont children's hospital in Wilmington, DE

http://www.otometrics.com/insights_june_...