Any babies with hearing loss?

[Sam182]

Hi all,

Alex had his first hearing screening test today and both ears were referred on the machines used. We now have to go back next week to find out the exact level of his hearing and what loss he has. Has anyone's LO had this and there was no loss or does anyone have a LO with hearing loss?

 

[Charliej101]

Hi

My little girl has profound hearing loss in both ears. She has a condition called auditory neuropathy (AN) which is diagnosed if they pass the routine newborn screening test (cochlear microphonics) but fail the second test which is only carried out on babies who have stayed in NICU (ABR).

We were told that the test in hospital can be affected by things like background noise so evrything may be fine at the referral. Also if it is AN the auditory nerve can mature and hearing can completly recover or improve.

I was initally shocked and upset but I have learnt a lot about hearing loss and there is so much support and technology out there. If the next test shows hearing loss and it is not AN Alex will probs be fitted with hearing aids, they are more conservative with AN and they may wait to see if there's improvement over time.

We have not seen a response with Lydia's hearing aid and we have been referred for cochlear implants which are an option if the loss is severe - profound and there's little or no response with hearing aids.

There is lots of support if there is hearing loss. You will be assigned a teacher of the deaf who visits regularly and the NDCS provides lots of support for children and families.

Good luck with the referral I hope everything is ok, please ask any questions you may have,

x

 

[Sam182]

Thank you so much for your reply x

 

[Marleysgirl]

Hi there, our little boy is now 30m (27m corrected) and has AN too. He "failed" the hearing tests just before he left NICU, and "failed" them again a month later. We tried hearing aids when he was a year old but it was too early, he was developmentally ready. We started again when he was a year corrected, and he's been wearing them on & off since then.

The problem we have is that he appears to have SOME hearing judging by his responses around the house, but he completely and utterly refuses to demonstrate this in the testing environment. They keep turning up his hearing aids, which annoys us as we think this may impair his hearing (in the same way that adults can damage their hearing being around loud noise). So we're at a bit of an impasse with our Audiologists.

PS. If you're inclined, consider applying for DLA. We were awarded middle-rate care following our son's diagnoses is AN.

 

[Sam182]

Thanks. Our ped nurse filled in a dla form for us as Alex is on home oxygen but don't know if we will get any help

 

[Marleysgirl]

Thanks. Our ped nurse filled in a dla form for us as Alex is on home oxygen but don't know if we will get any help

Wait to see whether you get an award and, if you don't, then try again but adding in the information about Alex's hearing loss too. I found some good information on the NDCS & RNID (now called Action on Hearing Loss) about how to explain the extra care that our son needed - for example, he couldn't hear our voices as reassurance, so we needed to stay within sight when he was awake.

 

[Marleysgirl]

Impasse broken (or breached or whatever the term is!)

Andrew has finally realised what is required of VRA testing, and managed to demonstrate that he has some level of hearing in his left ear. Next week we test the right!

 

[Sam182]

Fantastic news! Well done Andrew

 

[Sam182]

Well it turns out he's deaf in both ears. Thought we'd been through enough! They will start looking at hearing aids or implants at 6 months corrected. Really struggling to take it all in...

 

[Marleysgirl]

I know it all seems a little overwhelming just now. But it's not 'the end of the world', some children just need hearing aids in the same way that some children just need to wear spectacles Or at least, that's how I've rationalised it

Take a wander over to the NDCS website and sign up. They send out a very informative magazine, plus they have literally loads of booklets and leaflets about deafness, what support you can get, etc. They organise family weekends for different groups of parents (e.g. parents of newly-diagnosed deaf children, parents of pre-schoolers, etc) so that you can get support, information, and generally feel less alone. They've also got a discussion forum (though I don't particularly like the format).

We've been back and forward to the Audiologist for the last couple of weeks, we finally have an audiogram (chart of loss/frequency) and his hearing aids have been tuned to fit his loss

 

[Charliej101]

NDCS is definately a great place to start. I recently went on a newly identified weekend and it was really helpful to meet other familes and to speak to deaf people. You can download or order publications which provide more information on things like cochlear implants, understanding hearing tests, hearing aids and loads more. NDCS also have family support groups. There's also a group on FB which tends to get a lot of responses to any questions you have or just for support from other parents.

Its great that they're considering implants so early with the right support he may have little or even no delay in his language development. We recently met a 3 year old who had been implanted at 18 months and he had age appropriate language development. All children are different and outcomes are different but it shows you what is possible for a profoundly deaf child.

Hopefully you're teacher of the deaf will be very helpful providing you with support and answer any questions.

It is hard at first especially when you've been through so much already but we've met lots of fantastic people and learnt so much that we would never have known. I still feel upset over little things but Im very optimistic about her future.

If you are interested in learning sign language Tiny Talk run baby sign groups the locations will be on their webite and you're TOD will be able to tell you of BSL courses in you're area.

 

[bumpsmum]

aww samantha so sorry to read this after everything it family have already been through x