Mom of 16-month old with profound SHL

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rhyka2013

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Hi, I'm a mother of a 16-month old baby girl diagnosed with profound sensorineural hearing loss. The diagnosis was just made a month ago but I've noticed a lot of signs since she was around 9 months.

A bit of history. She was born at 35-37 weeks (almost premie, numbers aren't clear) with a weight of 3.5 pounds (half the normal baby) and she had apnea for around 2 weeks of life. She took caffeine citrate to stay breathing. Her condition was uncommon -- an almost full-term baby born half the normal weight with no infection whatsoever. I didn't get sick throughout my entire pregnancy although I think I might have had hypertension due to excessive weight gain.

Anyway, as she was growing, I was always on the lookout for warning signs, anything out of the norm. She passed her newborn OAE so the doctor didn't observe the senses very closely. But as she grew, I noticed she never gets surprised or startled with loud sounds. At 12 months, she doesn't turn around even when I call her and she also hasn't spoken a single word. She barely babbles.

So at her 15-month check-up I asked the doctor if we can have a hearing test. She had an ABR test and the result was profound sensorineural hearing loss, bilateral. An ASSR was made for hearing aid adjustment and at 100 dB, both ears don't pick up anything. She's wearing hearing aids now but I haven't noticed any improvement, although it's only been a week.

The reason why it took up to her 15th month for me and my husband to get her tested was because we were partly in denial. We didn't want to believe that there was something wrong with her. But now it's clear to me that we should face it and solve it instead of hide from it forever.

She's 16 months old now and apart from being deaf, I think she has hypotonia. She cruises and crawls quickly but she hasn't taken a single step on her own. She also can't sit upright. I'm still on the lookout for anything else but I'm hoping she grows up to be a strong and happy lady because that's all I ever want for her.

I just wanted to reach out to other parents out there who also have disabled children. Do any of you have children who are also completely deaf like my daughter? How did you help her in terms of communicating, since it's very difficult to communicate with a baby/toddler? Do your kids have any other disability apart from deafness?

I think I'm getting depressed and I just want to find some comfort knowing that there are parents who are going through the same thing as I am. I attached a photo of my baby if anyone wants to see. :)

Thank you for anyone who will respond.
 

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we also had someone going through the same with her son! (U might see her previous posts)
 
I would strongly suggest contacting your State's School for the Deaf. They can give you SO much information, hook you up with resources etc etc etc
If hearing aids absolutely clearly 100% don't work, there is NOTHING wrong with opting for a CI. She may not be able to hear as well as a kid who had some hearing with HAs (and I really do think that's a big part of the "success" with today's CIs.....a lot of ambigious loss kids, who get SOME benefit from HAs getting implanted) However she most likely will get SOME hearing...I'm NOT saying that it won't work... Just saying that it seems like just as with HAs, kids with CIs experience varied levels of benefit with them. (I just LOVE how pointing out that the effectiveness of CIs varies is taken as an attack, when nobody attacks people for saying that the effectiveness of HAs varies a lot for kids with audilogical "deaf" losses)
Regarding language......ASL is a MUST if your kid is profoundly deaf and doesn't get benefit from HAs. The overwhelming majority of dhh educational programs do offer a hefty dose of speech therapies/ HOH style interventions/services......
Look into EVERY and ANYTHING.... (with the exception of the auditory verbal lifestyle approach...Hate saying this, but that whole hog approach IS abusive and overkill b/c it's exclusive and demands that a dhh kid use only ONE tool, that is speech and hearing ) Kids deserve a full toolbox of options... Also I know this is early, but maybe think about moving to a state with a REALLY good deaf school so that your kid can attend it.
 
Has she had speech recognition tests ,she may be not be understanding what she is hearing and not talking . I am not sure how old your child will have to be to have this test.
 
The OP and her husband are going to have to accept her as a deaf child. She can not make her hearing like a normal hearing. Totally opposite. She will only hear funny sounds which is part of environment sounds (not clearly). Don't expect her to be like you and your husband as normal hearing.

While she is young (a toddler), it is wise that you and your husband learn to sign baby signs to your daughter. Your daughter will appreciate that you take the time to learn and share communication with your daughter.

There is a program on the PBS channel called "Signing Time". You can learn with her what you both need to learn the sign words while watching T.V.

Just letting you know that ASL is our primary language for us to use as we use visual a lot for body language and signing. That help us communicate better than trying to lipread which is impossible. So enjoy being with your deaf daughter.

As for me, I don't approve of CI, because it is surgery. It is a risk your daughter have to take. What about if the device did not work and need to take the device out. That would cost more money for that. You have to research about CI carefully. So good luck. :(
 
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