Originally Posted by patch2006uk

Hope all goes well tomorrow (and the little man cooperates!)

We don't have any deafness in our family that we know of. His birth wasn't great, and he'd passed his meconium, which was all in his ears really thickly when he was born, and we know his heart rate disappeared from the monitor before they took me for the c-section, so we don't know if it's genetic or a mild birth injury. We thinks it's more likely genetic - apparently most deaf children are born to hearing parents, but I suppose we'll never know for sure.

The worst part of it all for me was the newborn hearin screening. I was in a mess from the birth, and the woman was really unhelpful. He failed on 2 separate days, after them trying a few times to get a response. I didn't know what to think, it was before visiting hours, so I was on my own, and I was just left feeling like 'oh, my baby's broken'.

Trying to keep him asleep for the initial audiology tests was a nightmare. We had to go back 3 times, and they only just managed to get everything done. My main memories of LO from those early weeks are of us in a soundproof room with clicks going off.

Originally Posted by Luvmysunshine

My LO doesn't have hearing loss. But I have worked with many kids/babies with HL. And can I just say how on top of things you ladies seem? I've worked with children who have bilateral profound sensorineural HL and parents didn't notice/seek help until almost 2-3 years old. Those poor kids are still struggling. But you ladies are learning sign, keeping up with appointments and working with your kids. It's wonderful. Early intervention is so very important and you have given your LOs a great start. I just wanted to say that it sounds like you're doing a wonderful job!

Originally Posted by deafgal

I was born severe- profound (80 db level in both ears- well my audiology report says profound in both ear but I always managed to get some benefits with hearing aids with some lipreading) my older sister was too. I was fitted with phonic FM (also known as auditory training) system when I was three years old before I entered preschool. later fitted with phonak superfront BTE for home only, I still had to wear my bodyworn phonic ear until I was in fourth grade. I went to mainstreamed public school all my life as the only deaf person.

nowadays, they use cochlear implants for people like me. And I have one . I was implanted in 2003 in my mid-twenties. But I still suggest adding sign language (the type that depend on visual and not spoken like signed exact english because for a long time I yearn for accesible language without depending on technologies, especially I have kids of my own.

Originally Posted by Charliej101

My LO is profoundly deaf in both ears. She was born 11 weeks early which is probably the cause of her hearing loss. We sign with her but she's not started doing any yet. I am trying learn sign language as we dont yet know how much hearing she will have and I would like to give her a choice of communication.

She has one low powered hearing aid which does not seem to be making any difference. She has a condition called auditory neurophathy which is quite rare and mainly found in babies that have been in SCBU. Her hair cells are functionig fine but the auditory nerve isnt passing sound to the brain. In prem babies there is a chance that the nerve can mature therefore they are conservative in management of the condition before she is 18 months so they dont damage the hair cells.

We have been referred for cochlear implants but have to wait until after shes about 18 months. She has had the MRI scan whcih shows she's a candidate and just waiting for behavioural tests when she's about 8 months corrected.

I was upset when I first found out especially as I had no experience of deafness but Ive received lots of support from NDCS, TOD and a playgroup for children with HL. Now I know more I am very optimistic that with the right support she will do really well and Im just so grateful that as far as I know she is otherwise happy and healthy.

Its great to chat to others in similar situations. There's also a thread in the prem section as there's a couple more mums with babies with HL.

Originally Posted by gem1985x

H2i Deafgal , how do you find your CI's ? would you do it again if you had to? Thank you so much for sharing your story !

Originally Posted by Sam182

My LO has severe hearing loss (85-90db) in both ears. We are going to see our audiologist on the 24th to find out if it's improved at all as he was so premature and if not we may get his ears moulded for hearing aids. It's been very difficult for us as Alex has other health problems including chronic lung disease which means he requires oxygen 24/7. I'm glad they found out early so that he has a good chance of developing speech fairly normally x

Originally Posted by gem1985x

Hi Sam , I see ur from Glasgow is it yorkhill u attend the audiolgist ? we go to Hamilton! Im sorry to hear about Alex;s other health problems, I feel the same as you about finding out early . The audiologists say that 10 years ago DJ would have gone undiagnosed until 2 and I would have been told I was a nuerotic mother !

Originally Posted by deafgal

I will be very careful about too many surgeries before the age two (there is a research linking to learning disability), so be careful about cochlear implant recalls. http://www.google.com/search?hl=en&c...crnk_fspiked.1.