Newborn Hearing Loss

Hi- We used Dr Bauer too and really liked him. Hopefully his office can cordinate everything for you. Best wishes.

T.,
My daughter was diagnosed at 14 months with a hearing loss. At the time of her diagnosis, we also had a 4 month old baby. I cried and thought surely the audiologist had to be wrong. However, it does not help to be in denial, so we got on our feet and figured out what we had to do for our little one. We also saw Dr. Bauer, but have since changed doctors to one in the HEB area who I absolutely love. If you are in the HEB area, I would also recommend that you see Bari Pham at the NE Cook Children's Rehab Center. She is an audiologist and is phenomenal. Early intervention is definitely the key here. If cochlear implants are on option, I have a friend whose son received them and I am sure she would have no problem talking with you about it. My daughter is now 5 and has overcome numerous medical battles already. She is a trooper and is exactly who God created her to be. She is a ray of sunshine and a joy to our family. I would love to help you in any way that I can, please feel free to call me if you have questions. ###-###-#### S.

T.,
ABR stands for Auditory Brain Response, and that's just what it is. Hearing is measured by the way the brain responds to sound. I had a child who was born profoundley disabled and when they did the first 2 ABR's we were told he was profoundly deaf in both ears. However, after a week in NICU at AMH he was transferred to Cook Children's for continued treatement. While there he began responding to sound and they repeated the ABR only to find the profound hearing loss in one ear only and the other ear had basically normal hearing. We were going to utilize the Callier Center but we were on a waiting list for a long time. Of course this was nearly 10 years ago and things could have changed. ECI was a MAJOR help to us. I can't say enough good things about them. Just be persistent and YOU manage his care and don't let others dictate to you what needs to be done because there are some who will try. Take care and best wishes.
M.

I was a Teacher of the deaf for 27 years in the UK T..I'm now enjoying my family both here and in New Zealand.

However, I wanted to reassure you that you really are quite lucky to be here in this country, and at this time now (even if you nay not feel quite this way at the moment!)...there are so very many things that can be done for your little one.

The key, as you said, is early diagnosis and you have that. Remember too please that these children are children first and then youngsters who just happen to need a little extra help -then enjoy!

I hesitate to give any other advice than this as, whereas I have experienced a little the agencies you mention it was not as a ToD so feel sure that others can do a better job of that than I. However, if ever you need reassurance or help please do contact me again -I'd love to help you if I can

J. (mother of two and grandmother of three)

Hi,

I am profoundly Deaf and I speak very well. I also teach ASL.
Please not to rush to get a cochlear implant. Do a lot of research before you make a decision. Many Doctors do not tell you the other side of story about it. They just want money. It is not a cure and it will not work for everyone. I have friends who had headaches and that it did not work for them.

Barbara's video, she signs in her video but it has built in transcript
http://youtube.com/watch?v=m-jtr_juBpk

La Rhonda's video- also has transcript
http://www.earofmyheart.com/wordpress/2007/11/26/confessi...

Links: use search box "cochlear implant"

www.deafread.com
http://blog.deafread.com/mishkazena/

You can search for more on the net..

Good Luck,

D. L.

3 children 16,13, & 5

Hi T.!
Just curious, did you have a C-Section? Sometimes C-Section babies tend to fail initial hearing screenings. Sounds like you and your pediatric audiologist are taking all of the appropriate measures and steps to figure out the exact issues. ECI will likely put you in contact with your local school district's SKI-HI person ( ECI but works with babies with hearing loss issues.) Early intervention is key and you are doing EVERYTHING that you can! Hang in there! I am a deaf ed teacher in the metroplex and a mommy of a 2 year old with one on the way.

I am a deaf ed teacher, and I suggest that you research cochlear implants very, very thoroughly! They destroy whatever residual hearing your child has that could be used. They are also very high maintenance. There are other avenues to explore before going the cochlear implant route so early, so please do not choose a route based on what an doctor, teacher, or other professional tells you to do. Choose an option that is best for your child & for your family...it may take awhile to make that choice.

Early intervention is the key!! In whatever communication method that you choose whether it's signing or voicing! You must be an active participant in order for your child to be successful. If signing is best, then you must learn to sign fluently.

I'm sorry if I seem on my soapbox. It bothers me when I get a new child in my class that is 9 years old & doesn't have any method of communication beyond pointing. All those years wasted! Good luck with whatever you choose!!

I just found about your child's hearing loss. Let me know about the MRI. I hear that you guys are thing about doing an implant. I am hard of hearing since I was a child. I would suggest that you talk to people that are deaf or hard of hearing that had the surgery. Ask them if they are happy. There are lots of advantage and disadvantage. I know that the technology is better now, but find out if you child will be able to go swimming or scuba dive if he wants to do that when he gets older. I would advice not to have the surgery, because you guys are thinking what is best for yourself instead of what best interest for the child. Learn more about it before doing it. Like I say. Talk to the people to have already had it done. I been hard of hearing all my life and I would not have that surgery for myself. The child can learn sign langauage as well as yourself too. It is not that hard to learn. I would be happy to teach. I had just watch the movie about a week ago called "Sweet nothing in my ear" I hoped you guys had a chance to see it. If you haven't I believe I recorded. I can tape it for you guys if you want to watch it. I wish you all the best and the child too. All I can say is that you can't force a child to be hearing when he/she can't. Best wishes. I am a single mom with 2 girls. Ages 14 and 11. If you want to talk. Just email me and we can chat. If you want my phone number I can give it to you. Okay. Take care and let me know what the doctor say. I am totally against cochlear implants. But then again. That is my opinion, but if you talk to some of the deaf people. They will tell you the same thing about what I have been saying. Not to do it. Think about the child. Would he be happy that you guys decided to do it without asking him if he wanted to have that done or not. That the big question. Let the child decided when he grow up. Not while it is a baby who can't speak for himself yet. Best wish to all of you.

Where do I start! First, just enjoy your son - things will get better regardless of what he is diagnosed with and what disabilities he may have! Just love him and everything else will fall into place! You are doing the right things as far as going through the Dr's and ECI. My 13 month old son has a genetic disorder with very many delays and medical problems. He was diagnosed at birth. We went through ECI for a few months but ended up turning to a different company for therapy. Where do you live? I would recommend going through Therapy 2000 if they are in your area - for speech therapy and whatever else he may need. ECI has very limited funding and staffing. He will only be seen twice a month. With Therapy 2000 we are seen twice a week per therapy, we have Speech, occupation and physical thru them . www.t2000.com

As far as the MRI - my son had his first at about 3 months of age, I'm not sure if they will do it before then. He has had 3 or 4 MRI's in the last year at Cook's. They are wonderful!He will be sedated then have the MRI, afterwards they will move him to the recovery room until he wakes up.. Its pretty intimidating when you are waiting for it, but its a piece of cake! He will do fine!

Also, depending on his final diagnosis you would want to apply for SSI. If you don't qualify income wise you can still get him on Medicaid via a waiver - they will pay for everything he will need now and in the future. There are alot of programs out there that you can also get on the waiting list for.

I know what you mean about making the right decisions, I feel that way all the time! I too pray that my son will be able to speak someday, its not something that many have to worry about. For us theres a 50 percent chance that he may not and a 90 percent chance that he will be delayed. We go in Thursday to our ENT, we suspect our son may have some hearing loss as well. We tried an ABR a few weeks ago and couldn't get it done because of too much fluid. We will be getting tubes first then another ABR.

Hang in there, I know what you are going through!

I have a 6 year old son with profound hearing loss. He has a rare syndrome so he also has several other congential anomolies. We found out at birth that he was profoundly deaf. He was implanted with a cochlear implant at 13 months. Because of his mulitple disablities he doesn't use the implant as a way to communicate although he can hear with it. He is an avid signer.

I remember being in similar shoes and it can very scary stepping into the unknown. I know that I was really really concerned about my son not having communication. Even though he does not speak he is such a great signer.

Christian attended the day school for the deaf between 3-5 years old. There were several kids there who were just deaf and they had implants and were doing awesome. They were talking and communicating better than my typical 3 year old.

We also attend Callier Center and they are WONDERFUL. My son has been in speech there for almost 3 years. I highly recommend you seek private therapy on top of ECI. Especially if you get an implant. They are still evolving and many speech therapists haven't worked with that many individuals.

Lastly we have seen both Dr. Bauer and Dr. Roland (children's medical center). Both are great. Dr. Roland actually did our implant and he will do our 2nd one in June.

Please don't hesitate to email me with any other questions.

Oh, and the MRI. They will put your sweet baby to sleep. Don't worry, they do this all this time with new babies. He will do great.

I hope you find peace in whatever decision you are led to.

Blessings.

I do not have a deaf child, but I do hope everything goes well for you and that you find the answers you are looking for; I do, however, know about MRI's. You have to be pretty much well totally still for an MRI. Most babies and toddlers are not capable of this feat, so they are given medication through an IV to sedate them. What that usually means for you is that when you call to set up the appointment or do the preregistration stuff, you will be given instructions to make sure that you baby has not had anything to eat after a certain time. They will place an IV in your child before the MRI, give them the medication, do the MRI, and then they will watch your baby until the medication has worn off and you baby is no longer sedated. It will proabbly seem like a long day for you.

T. K,

First let me start by acknowledging the multitude of emotions you’re experiencing while you deal with your son's diagnosis. Our family experienced a similar situation shortly after our youngest member, William, was born. William was born via emergency c-section after his heart rate dropped suddenly during delivery. He failed three hearing screenings: first in his left ear (we disregarded this result because we do not have a family history of hearing loss and it's not uncommon for babies delivered via c-section to have fluid remaining in their ears), second in the right (again - we were not overly concerned because we were focused on why he was not able to maintain his body tempeture) and the third in the left again (worry finally step in).

Our Pedi, Dr. Naylor, was proactive and referred us to Dr. Bauer. William also failed his hearing screening during our initial visit with Dr. Bauer. We went to Cook Children’s Northeast Center for our ABR with Bari Pham. During the ABR William woke up, so we would have to reschedule to complete the process but the initial results confirmed William appeared to have moderate to moderately severe hearing loss. We immediately had William fitted for hearing aids because all of the literature I read emphasized the importance of early intervention. The hearing aids were a serious adjustment. I had a difficult time with the hearing aids because of what they represented. I read a book by Patricia Ann Morgan Candlish, Not Deaf Enough: Raising a Child Who Is Hard of Hearing with Hugs, Humor and Imagination. It really helped me cope with the hearing aids and made me realize they were the windows to the hearing world for my son. At the second ABR something miraculous happened. It appeared William had normal hearing. We were instructed to discontinue use of the hearing aids until further examination with Dr. Bauer. Dr. Bauer's through examination reveled William had fluid in both ears which would require tubes. William passed his hearing screening for the fist time after the tubes. We have our second follow-up hearing screening in May. We hope our son's hearing will be normal without the tubes.

Be aggressive, don't be afraid to ask lots of questions, acknowledge your feelings and leverage all your resources. We joined AGBell and used ECI until we we're no longer eligible for services.

My thoughts and prayers are with you and your family. Please feel free to contact me at ###-###-####.

R. Tolen