[Caroleeeee]

I just came back from adopting my adorable 11 month old with whom I waited for since day 1. She was just as cute as you can imagine -- and the intiial hours were picture perfect. Then I began wondering if she had a hearing problem. I remember my emails I sent when she was 4 month old (at the advice of my interenational adoption specialist to ask about her hearing -- and was told her hearing is fine. WELL -- not true ----- she can hear NOTHING (or very close to it). )

i had only 2 days before I returned to the US, still unclear about her hearing but was told by everyone there -- of coursse she can hear, etc....)-- so I though it was just different language accents, over stimulation etc

Now I am home, after several medical apptmts -- and learn she has significant hearing loss -- and may not hear at all. As a single mother of a 5 year old and now 1 year old, I am pretty stressed adn sick to my stomach over the sitatuion. It has been very traumatic and turned what should have been a joyous occassion for me and my 5 year old to a stressful one. My five year old loves the 1 year old and I do too -- but I can't help wonder if they knew aobu this hearing problem and if I had known it the night I met her, what would I have done. (I am clear that I would have turned down the referral if I knew on day one).

I tell you this for 3 reasons: 1) I didn't visit my daughter in advance --- and perhaps I should of. 2) think about what you would do if you get into this situation, and 3) any suggestions or ideas for help/assistance in this situation. I can't imagineturningherawaybutam quite scared at this point of what life will bring moving forward.

Any words of wisdom????

[ej-momtobe]

Sorry to hear about this. this is sad for the little girl. I hope you love her enough to work through the problems.

I know nothing about hearing in children, but was wondering when we visited our baby at 2 months old how we would tell if his hearing is normal. We have no reason to suspect it is not, but we just wondered about all of the little details. Maybe if you had visited you still would not have noticed anything wrong with her hearing, unless you know what to look for.

Have you seen the reports from the doctors...from the embassy doctor? Perhaps you could find out what types of hearing tests they did. That may give you an idea if they knew about the problem and covered it up, or if it just didn't show up until later. If the Attorney and Agency covered this up, that is just aweful and totally unethical and they should be exposed for what they did. (maybe go to the big list and post).

Good luck to you and your family...and learn from your daughter. Sometimes people with a handicap help us see the world in a different way.

[drjeanne]

Oh, I'm SO sorry to hear this! I know it's scary and you're wondering if you can handle it! When we visited our daughter, we thought she had a hearing problem and I worried and worried and worried about it. Everyone says she doesn't but, we won't really know until we get her home. At one point, I was crying about it and my DH looked at me and said "if she does have a problem, it makes no difference to me. We're taking her home anyway". Something about that statement gave me peace about the situation. I know your situation is totally different but, I'm sure you are a strong lady(a woman! single with a child and adopted another? VERY STRONG !!!!) and can make the changes necessary to help your DD grow up to be happy and healthy! You need to find a good physician who can provide you with information you need and a good support group. You can do this!

I wish you the very best of luck! I'm sure everything will be fine!

J

[Mindybeth6]

There are a LOT of interventions that can be done for children with hearing loss. THe important thing is to start them NOW. THere are programs that are federally funded, surgeries that can correct certain types of hearing loss , and also hearing aides that that can be put in yout child's ear (choclea implant) Spelled wrong I am sure. Anyway...look into all of it.


Now...on a personal level. I work with special needs kids, some of which have hearing loss, and I can tell you that with simple communication strategies these children live a full and wonderful life. Yes, it is stressful, and yes, I am sure it is heartbreaking...I would be devestated. But she is your daughter now and regardless of whether or not the agency or the people invloved in the case knew anything about it...well...it doesn't matter as much now because the fact of the matter is..she is an innocent victim in all of this and needs you to love and adore her right. Children can even learn sign language at this age and it will often times be paid for by the state. My suggestion would be to continue seeing DR's and DEMANDING answers until you get the CORRECT diagnosis and then call family services becasue they can direct you to the specific people that can help...your SW should also be able to help with that.

I am sending you big hugs as I know this must be shocking and I am sure a very painful experience for you. But please don't give up because there is SO SO much that can be done. THe key is to start it NOW so that she does not get behind in cognitive abilities. With proper care she will be the daughter you dreamed of having...just a little different. I will say a prayer for you and I hope that you can get the answers you need from all aspects of the situation.

Big Hugs

[doghouse]

Do not panic. Hopefully, after seeing an ENT, your baby will get the medical attention she needs. Perhaps surgery...I don't know. So much can be done these days. It is probably unhealthy to wonder "what if I had only known". You are probably mourning the loss of the dream of the "perfect child" and not actually overwhelmed by your day to day situation. Correct me if I am wrong.

My second bio-baby was not the baby I had "ordered" from the baby factory. It took over four months to bond with her, but we made it and now she is a happy 6 year old. Bonding takes time. I am reminded of the movie with Tom Hanks where he was stranded on the island. He managed to bond with a coconut, I managed to bond with my coliky baby and you too will bond with your warm, soft, fuzzy little baby.

After losing our first referral, we have just accepted our second referral. God only knows what sort of genetic illnesses our referral has. So much of life is out of our control. There are many parents of children with speech and hearing problems. I recommend finding a support group in your area.

[LCG]

I am sorry you have to go through this. I am a speech therapist and have worked with hearing impaired children many times. You have to determine what type of hearing loss it is. I don't want to get your hopes up, but sometimes it is correctable.

With the more severe sensory neural hearing losses there is something called a cochlear implant which has been improved over the past several years and is quite effective with the right training and therapy.

I don't want to minimize what you are feeling b/c this must be a shock and a saddness and mourning for your perfectly healthy child but as we all know, nothing is guarenteed. None of us are going to go through life without significant health problems, some just start earlier than others.

Simple sign language is quick to pick up and a necessity for a child with hearing loss so they are still able to develop language.

I am so sorry, If you need info on where to get help please let me know but it is important that she start early intervention asap since language is emerging and must be facilitated.

Laura

[Aleea]

I know this is a HUGE shock, but there is no reason why your daughter cannot have a full and wonderful life.
I have deaf parents and I'm a sign language interpreter, I'm very active in the deaf community and would be happy to answer any questions you may have.
I STRONGLY suggest you learn sign language. I still do not understand parents who have deaf children and refuse to learn sign language. It will significantly help your daughter's development and your relationship.
There is a support group in my area for parents of deaf children, maybe there's one in your area also and that would help.
Anyways, I'd be more than happy to speak to you via pm and answer any of your questions.
Aleea

[coachmom]

Stay strong!! your love for her will help you through!!! WE are here to pray for you...
Doretta

[momofmng]

I am sure you are already taking many proactive steps, but one thing that I thought I would mention is this. I have heard from many parents of Guatemalan born children (my daughter is included in this generalization)that their ear canals are VERY tiny and the ear wax builds up in them heavily due to the size of their canals. Many children end up with tubes since there are recurring ear infections.

I, myself, had both eardrums burst as a child and was severly hearing affected for several months and was beginning to learn sign language. Luckily, the problem was short term.

My Sophie has very thick, flaky ear wax and ear canals so tiny, that all the doctors that have looked in them cannot visualize her eardrum... we have had a couple of ear infections already. I had her assessed my a hearing specialist when she first came home through my state's early intervention program and she luckily hears just fine. But, she will be seeing an ENT this spring to rule out tubes.

I would first call your ENT and have her evaluated and if the problem is detected, contact your local Deaf/Oral school to ask about support and education programs. There are so many varieties of hearing loss and I will keep your daughter in my prayers.

Keep us updated on her progress!

Sarah
Another single mom who is sending you a hug!!

[laura-jean]

The fact is that she is your daughter now and you are her Mother. With that you must become pro-active and you have received some excellent advice here in regards to suggestions and help avenues.

When people give birth, and through life, we are never promised health.

I agree that you should have been informed and been given a choice to accept the referral or not. I am sorry you were not given that opportunity.

We have taught our dd a lot of sign language and she is not hearing impaired. We have an interest in being able to speak with those with hearing loss and it is a great communication skill for children. Let me tell you she is a sponge. A one time showing of a sign and she doesn't forget it. She enjoys it too.

There are so many well adjusted hearing impaired people... Just be pro-active and start young in either correcting any medical problems you can and/or teaching her signing. We started signing to our baby at 6 and 1/2 mos old.

I am sorry you are discouraged. I will pray for you.

Laura Jean

[crick]

You've been given good advice...I second the suggestions to see an ENT, audiologist and determine the exact kind of loss. That will give you a direction to go into and know what kind of a plan you can make. Might also ease some of your fears.

On the more emotional side of things....

Talk to people who have hearing losses and I think you'll find that it's not the kind of disability that warrants so much stress or fear. I understand the shock you must be going through, but like with anything unexpected that comes up, I hope you can get through that positively.

As a deaf person, I don't feel that I've missed out on too much really. And I really believe in some areas, I’ve gained a lot more out of life than some people do who do not face a disability or differences. One adjusts to life accordingly, I think and you find the way to live your life as you need to.

I didn’t choose to have the cochlear implant until 2004; after I became a parent. Then it was noted that I was continuing to lose what little hearing I had at a very rapid pace and would lose it entirely before I reached 40. I felt that it was time to make that decision and I wrestled with it a bit, but it was the right decision for me. The implant has opened so many new sounds to my life and I don't regret having the surgery for a second. Well...except when the microwave beeps every 20 seconds after it's done pressuring me to open the dang door and get the food out. That, I could live without hearing.

But before that, I still led a very full and great life! I attended public schools, swam competitively, played all kinds of sports, started piano lessons at age 5, did ballet and jazz dance, had friends, got my driver’s license, had a boyfriend, was the drum majorette for the highschool marching band, went to college, got a professional job, married and adopted 4 little ones. While there were times of frustration, that's simply part of life. We all go through life at times feeling depressed, frustrated, or angry about things we don't have or things we want. In the end though, you do what you need to do to own your life and make it what you want it to be.

I don’t share all of this to convince you that there is no big deal about being deaf. I do share it though in hopes to show you that it’s not impossible to live with a disability. And it’s not a cloud of doom, or just possible or barely living…but actually happy, successful and not all that different than your own life. I also share this to tell you that what made all the difference in my life was having parents who truly believed in me and in everything I chose to do. I never heard “you can’t do that” but was instead encouraged and supported. Sometimes we had to come up with creative ways to accomplish things, but we did it. They were my biggest advocates too, and I owe a lot to my parents for their belief and full acceptance of me.

So for your daughter, learn all you can, be her advocate, but most importantly...love her and believe in her. Celebrate her differences and teach her to be proud of them.

[wannabamom]

I'm sorry, my views might slightly differ from the others' views here. I really feel so so MAD at the agency, and the attorneys who did this to you (if they really knew about it!!!!)!!!!!!!1-- After shelling out so much money everywhere, I really have lost all trust in the IF Docs, agencies, etc...... I feel they only sometimes think about $$!!!!-- Sorry, there might be good Docs, etc. out there, but my experience has been this. Having said that, I really wouldn't know what I'd do in your situation. Firstly, I'd get the baby's hearing loss situation assessed. Then, if there's ANY proof that this is from birth, or before you picked up the baby, I would take some action on the agency, etc....BUT, the BABY IS INNOCENT!!!!!-- So, like others have said, I'd try to work best in this situation- but simultaneously working to find out the truth and not letting those agencies, etc... go without any action if they're liable!!!!!!-- So, I too like the others here pray for you with all my heart, and hope everything works out for you!!!!!-- Shame on them whoever did this IF they knew about it!!!!!!!--

[csw]

Well said Crick..

I am very surprised the foster mother didn't think there was a problem..esp with having her for 11 months...
something strange going on there..

The Embassy doc does not do a hearing test..the physical that our daughter got there was actually kind of a joke..he was very nice..but just took her paperwork and copied the vaccine schedule she got..and signed..

I also grieved and am still grieving for what happened to our daughter in Dec 04..it is very hard..you can PM me anytime..

I would love to see a photo of your kids! Take 1 day at a time..1 step at a time..you can do it!

[Mamarama]

First, at 11 months it does seem that someone should have picked up on this if it is severe. But sometimes parents don't notice hearing loss until right around this age or later. I can assure you that most adoption professionals will immediately communicate this type of information to in-process parents.

I'm sorry that this has been thrust upon you without time to prepare. But if you had a biological child, it would likely happen the same way -- one day, it would hit you -- and you'd say eek, I think she can't hear (and rush off to the pediatrician).

But if your daughter has substantial hearing loss, then she can (and most likely will, with the proper support) live a full wonderful life and so can you.

If you make contact with the deaf community in your area, you should find much support and information and probably even hook up with other hearing parents of non hearing children.

Having said that, if you would like (and think it might help you to know), then you might contact your child's pediatrician in Guatemala and ask if there had ever been any concern about your daughter's hearing. And if so, to whom was that information communicated?

All the best,
T

[desilu1991]

Hi, I am sorry that you've been through so much at what should have been such a happy time for your family. Everyone has given wonderful advice and I 2nd it all.

We fell in love with a 2 month old baby boy and after a month of trying to nail down his referral, before they would say he could be our baby, they told me that he was 'special baby medically'. Sometime between 2-3 months, they had done an ABR and some other test where they put him to sleep and tested his hearing by watching his brain waves during sounds (I don't really know how to explain this test.. but something like this).. Anyway, the tests showed he had about 5-10% hearing in one ear and less than 5 % in the other. So they told me he was profoundly deaf and I should probably think about it before accepting his referral. My husband and I talked about it but we already knew he was 'ours' whether or not he could hear. If he was deaf, we'd learn everything we could about it before he came home and have the specialists and early intervention people ready for him. I also stumbled across a fantastic resource called the John Tracy Clinic in CA. I believe you just type in jtc.org and it will take you to their website.. All the info is free; they will mail you videos, lessons, all kinds of helpful things and you can take correspondence courses on how to understand and help your child become all that they can be. They have audiologists you can email with any question and they're prompt to respond. They also were very encouraging and called me a number of times to check up on Luke.

We visited when he was 5 months old and the caregivers told us they thot he could hear and after spending several days with him, it was obvious that he could hear some, if not a lot. We brought him home at 9.5 months and had the same tests repeated that he had done at 2.5 months. The results of those, as interpreted by the audiologist doing it, was that his hearing was in the 'slight loss to normal' hearing range.. She said it was nothing to worry about and he didn't need any speech therapy or anything. Well, a couple of months ago, the John Tracy Clinic asked for a copy of the test results and I sent them to them. I got a long detailed letter back from their pediatric audiologist and she believes he has a mild to moderate loss based on those results. She said I need to get him for sound booth testing as soon as possible because that will really be even more conclusive than the ABR. The last time we tried sound booth was 10.5 months and he didn't respond to a single sound, except a special word that my daughter had told him. Not even a jet engine sound... so I'm anxious to get him back in and I'm waiting for an appt right now.

I don't know if I'm dealing with a loss at all or if we'll have a good report from the sound booth, but either way, I have learned that there are so many excellent resources out there to help and I am up for the challenge no matter what happens. I know it's hard when you weren't prepared, but maybe it won't turn out to be as severe a loss as you think.

I would get her in for more tests as soon as possible.

Please feel free to pm me anytime and I'll do anything I can to help you..

take care,
Judy