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Diagnosis-what next

Posted by becca
17/06/20 11:00 AM

Hi Everyone, 

I'm Becca and I have three girls-5, 2 and 6 weeks.  My daughter Hannah (6 weeks) has just been diagnosed with significant hearing loss, no family history so this is all very new for us.  We are going through the diagnosis process now and I’m trying to understand more about the experiences she (and we) will have as she grows up and we make decisions about support and aids/implants for her. 

So far we have had the hospital audiology test which was headphones and then the sensor behind the ear to try and bypass the ear canal.  Friday is the pitch tests (because after 2 hours I couldn't keep the baby happy and calm without a change of scenery) 

Can anyone clue me in on what's likely to happen next? I've been told interim hearing aids will be quite quick but I have no idea of the process.

Thank you

Posted by catherine
17/06/20 07:57 PM

Hi Becca, 

 I have 2 boys ages 3 and Lewis is 20 months, he was also diagnosed at 6 weeks so I know exactly how you are feeling and that the path ahead is completely unknown. I promise whatever happens you will have great support, especially through NDCS.

Lewis is profoundly deaf in both ears and now has cochlear implants. The journey seemed so long to get to this point filled with so many appointments.

once they fit the hearing aids you will have to go back frequently to get new moulds as her ears will grow quite quickly. They will also continue to do hearing tests with the aids to see if they make a difference. What was frustrating for us was they made no difference to Lewis but we had to persevere for a year, until implant surgery. on the plus side he got used to wearing them and so moving to implant has been easy.

please keep in touch with what happens next and I will do my best to help. Feel free to ask any questions.

catherine x 

Posted by samb
18/06/20 03:41 PM

y son was diagnosed at 5 weeks (he is now 7) and had hearing aids at 6 weeks. You'll get the hearing aids and there will be tests with them on to ensure she's getting access to sounds and to determine whether it's sensorineural (permanent) or conductive (can be temporary or permanent). As said above you'll need new ear moulds weekly or fortnightly as shell quickly grow out of them. 
In addition to the hearing tests you will also have lots of other tests, ENT, sights tests, urine tests, DNA blood tests, you may be offered an MRI scan. All of these are to try to find the cause and also to see if the hearing loss it part of another syndrome. 
In the future it will depend on the extent of her loss whether you will need to consider implants (usually have to be severe/profound to be considered). You will be assigned a teacher of the deaf who should be able to keep an eye on development and also to help her at nursery/pre-school/school. 
I'd also recommen seeing if you have a local deaf childre's society in your area. Where are you?
my son has a moderate to severe loss, he wears hearing aids. His speech is pretty normal with only a minor delay on some sounds. He's at a regular school . Baby signing helped us in the early days with communication. Sadly we've not carried it on which I regret. 
hope that helps? I'm happy to answer any questions. 

Posted by becca
18/06/20 05:45 PM

Thank you so much-these replies are so helpful!

We are in Surrey, near Guildford.  We have pitch tests tomorrow and I'm really keen to get things moving so we know what we are dealing with So knowing to expect such frequent trips to hospital is really helpful as that will take me a second to get my head around purely from a logistics point of view so it's helpful to know what now before they tell me all this new information at once!

Will update this thread after tomorrow as I learn more


Posted by becca
24/06/20 03:31 PM

Hi everyone,

thank you for the points-was so helpful as I knew to push to get moulds taken then and there!

We managed to complete the tests after 5 hours in the room-such a mission!! 

Hannah has a severe to profound loss in left ear and moderate to severe in right ear so aids should help but it will be implants longer term.

Just looking forwards to seeing what aids can do for her in the meantime!


Posted by jenn
29/09/20 02:15 PM

Hi because just wondering if you have an update on how the hearing aids are working for your daughter.

My son is 3 weeks old and we were told yesterday he has severe hearing loss in his right ear and loss in his left (he can slightly hear in his left if its 100 decibels) we have been fitted for hearing aids and hope to get them in the next week or two.

It has come at a shock to us as there is no hearing loss on either sides of our families and my 2 older children have not had any hearing issues.