My little boy is deaf in both ears, anyone else experience this?

My son was born at 26 weeks and has had a hard time being born at 758 grmas and ventilated for 14 days then on another machine (CPAP) for 90 odd days and then on nasal prongs for home oxygen (which he is still on), and we had two test to say that he is deaf. He also had some CT scans and now just from the scans the doctors are saying that it is genetic. But there is no deafness in either of our families what so ever. has anyone else had this. If so whats was the story and the outcome. The doctors also said he will need a cochlea implant but they havent tested to see if it work yet.

Children born at 26 weeks are at very high risk for hearing impairment. There are three main reasons for this, 1) they frequently receive antibiotics or diuretics that can cause hearing loss, 2) they frequently suffer from jaundice which is linked to hearing impairment, or 3) they can have auditory neuropathy from an immature auditory system.

If the doctors say it is genetic, then none of the above factors caused the hearing impairment. The most common cause of hearing impairment is a recessive gene called Connexin 26 -- you might not have any family history of hearing impairment, but if you and your husband both carry the recessive Connexin 26 gene, then 1 out of every 4 children you have (on average) would be deaf.

There are no "tests" to see if a CI works -- if you've had the CT and you have confirming audiology results, that's all you need.

Earlier is better with CIs, so if your son is healthy enough at 1 year of age to undergo the surgery, you should do it as early as possible.

Good luck, and feel free to e-mail me with any questions.

Your son does sound like he would be a candidate for a cochlear implant, if he has severe-profound hearing loss in both ears and his cochlea is normal.

But as for deafness being genetic, maybe it is and maybe it isn't. Are you absolutely positive you both do not have any ancestors that were deaf in the past? If you're positive it's not genetic, maybe it was the premature birth treatments (I have a friend who was born prematurely, and she shortly became deaf afterwards from some sort of treatment she was given).

Maybe you can join the CI Hear Yahoo group and post your thoughts/concerns. There are other parents of deaf children with cochlear implants in this group that may be of some support.
http://groups.yahoo.com/group/CIHear/
I know there is another group available online for parents and professionals only that have/deal with deaf children with implants, but I can't remember the name of it.