Newborn hearing loss

[Nic91]

Hi,

My newborn has recently been diagnosed with a permanent hearing loss in both ears at severe level of loss.
Initially, I was upset naturally as this is something I have never dealt with before and came as a shock but slowly coming to terms with it.

Her next appointment is next week where they are retesting her and making moulds for hearing aids. Can hearing aids work for a severe level of loss?
Just wanted to hear of other people's experiences who have children with hearing impairments.

Thank you.

Hi Nic91

I can't offer much wisdom except my daughter (soon to be 2) was also diagnosed with a permanent hearing loss in her left ear at the newborn screening. It was thought to be a profound hearing loss. As time has gone on it, and several trips to audiology, we're now of the understanding that she is moderately to severely deaf in both ears. She has been fitted with moulds and has hearing aids for both. However there haven't been any consistently reliable results from the hearing tests she's had, so we are due to undergo a sedated abr test (tomorrow!) at the hospital to get some conclusive results. (Although she has a cold so it may not go ahead annoyingly). The hearing aids are currently set conservatively so need to be turned up but we are not sure on the levels yet. Her S&L is non existent for what it should be at this age, but she manages to communicate in her own way. From my understanding hearing aids will help for a severe hearing loss, but maybe cochlear implants will be the way forward. Good luck on your journey, it was certainly a shock and upsetting to us too. We obviously just want the best for our children!

My son was diagnosed as moderately deaf in both ears aged 6 , this was prior to newborn hearing screens . By the time he was diagnosed he had become an adept lip reader according to the tests done at the time . We had no concerns about his hearing , aside from being a late talker which in hindsight was probably a sign . He wore ITC aids intermittently until he was about 12 , in that I sent him to school wearing them but he invariably removed them . At school we always requested seating near the front and in good light so he could lip read . At 12 he stopped wearing his aids completely ( he has ASD as well although high functioning ) and relies on lip reading basically and what hearing he has . He is almost 30 and an assistant headteacher now so it hasn’t held him back , he’s very positive about his deafness and just makes sure that work set ups etc work for him .

I have severe hearing loss (well it was moderate as a child, it's got worse).

I've been deaf since birth, although I wasn't diagnosed straight away, I'm not sure they tested from birth in the 80s.

I cope perfectly with hearing aids. No one would know I was deaf unless I wear my hair up.

There was a boy I was friends with when I was little who had worse hearing than me and he coped perfectly with hearing aids too. We were at nursery together but then he went to a school for deaf children and I went to mainstream.

According to my mum, it took a while for them to realise I was deaf as I was an early talker. My mum was obviously a loudmouth 😂.

Your little one will be fine! There's so much support - even more nowadays. Deafness is more widely represented in the media too, which is fantastic. There was nothing when I was growing up.

Congratulations on your baby!

Consider learning British Sign Language whatever route you take regarding aids or cochlear implants. Make sure to find a qualified Deaf tutor. Depending on where you are in the UK, the National Deaf Children's society can provide support and family based sign language classes, as your usual level 1,2,3 type classes are not geared towards the language you need to use for every day life with a baby or child.

I also recommend John Bishop's recent documentary Life After Deaf to gain an insight as to why learning BSL can be so beneficial in addition to hearing aids or implants.