Thanks for thinking of me, Lottie!
Hi Charlie, and congratulations on the birth of your little girl Lydia! Let me tell you my story and where we are now ...
Andrew was born at 29+1 due to bloodflow failure, he was tiny (1lb 6oz) and came out of NICU two days after his original due date.
His newborn hearing test on the unit was inconclusive, so we returned when he was 4m actual (1m corrected) for a further newborn hearing test. He showed no brain response to sounds played, and he was diagnosed with Auditory Neuropathy Spectrum Disorder (ANSD). They feared he would be severely, if not profoundly, deaf.
First thing we did at this point was to claim Disability Living Allowance, on the grounds that we had to supervise him constantly and have face-to-face contact as much as possible. We were awarded Middle Rate care, which enabled us to claim Carers Allowance and funded one of us to be a stay-at-home parent (OH).
We were meant to return for a further newborn-style hearing test a few months later, but Andrew started being more active and we felt we couldn't keep him still or asleep long enough for that kind of test, so we declined. We returned when he was 9m actual for the first attempt at a hearing level test.
I don't like the hearing level tests, they rely on him responding to sound on one side by turning to that side. If he turns, he gets rewarded by the sight of a hidden toy or puppet. But he's not interested in that puppet even when placed in front of it!!!
After two attempts at a hearing-level test, he was given hearing aids set at a low level, this was around his first birthday. He hated wearing them and showed no visible signs of improved response. We decided he was too young (given his prematurity), and put them away until he was 16m actual age. During this time, the Audiology department arranged regular visits from a Teacher Of The Deaf, who comes every couple of weeks to visit us and Andrew at home, and to work with us on assessing and improving his responses.
Since January this year, Andrew has had hearing aids. But I have to confess, we have not been very diligent about him wearing them, and he only wears them (even now) for medical visits because his various support team expect him to have them. He had them on today!
Our opinion is that, whilst Andrew does have some hearing loss, it is nowhere near as great as the Audiology team believe (they
still cannot measure it because he won't behave in testing). He has "tuned out" most background noise, and that includes us - this may be a result of being on the NICU where there is so much background noise going on that gets ignored. He doesn't respond to his name, but does respond to a loud shout of "Eggy Bear" (his nickname). He loves to play with noisy toys, whether they have lights or not, we have a fantastic video of him playing with a xylophone and giggling at it. He can tell when his toys stop playing tunes, even with his back turned, and will go over and start them again. And (this is our favourite!) he hears the National Accident Helpline advert (Underdog!!) whenever it comes onto the TV, even if he's not facing that way, he will stop what he's doing and walk over and stand in front of the TV till it finishes.
During the last 8 months, Andrew has had hearing aids set at three different levels by Audiology, and doesn't show any improved response with them at any level. We have tried teaching him sign language, but he has developmental delay and focussing issues, so he has only learnt one sign so far - that for "more". He is not yet talking, but we are being advised not to worry yet about this, he may just be late developing that too. He had MRI & CT scans a couple of months ago just to check on the actual growth of his inner ear, cochlea & auditory nerve, and they all appear fine on the scans.
We return to Audiology next Thursday, and this time we have to take our own toys in (those that he responds to), and also video footage of him responding to noises (such as the TV advert). This may help to persuade them that he does have some level of hearing, as he refuses to co-operate in tests so they cannot measure it.
ANSD is a "spectrum disorder" because it covers such different levels of hearing loss. Until your baby is older, you won't be able to tell whether the hearing loss is low-level or severe, whether she learns to compensate or not. I've had support from the National Deaf Children's Society, and also from a couple of good online friends who themselves wear hearing aids; but the best support has been from Andrew's Teacher of the Deaf, and his Special Needs Support worker.
The crying that I did when Andrew was diagnosed with ANSD was nothing compared to the crying that I did when he was firstborn, on NICU, and it was touch-and-go as to whether he was big enough to survive. We still have occasional emotional wobbles, such as when we hear other 2yo's beginning to talk. But we have a fantastic little boy who has overcome so much to be here with us, he's an absolute joy.
If you want to know more, or fancy a chat sometime, or want to compare Audiology approaches, or even just want to moan ... drop me a Private Message on here and I'll let you have my FB details and my email address.
Andrew started having regular (every 2-3 weeks) visits at home from a Teacher of the Deaf, who plays with him, assesses his hearing, chats with him and tries to teach him baby signing. The value of those sessions isn't very obvious, but we don't want to stop the sessions as he may need that level of support at some time in the future, so we want to stay on their books! That teacher works as part of the local Sensory Support group, and they run a fortnightly "music group" where they play with percussion instruments, sing nursery rhymes and do signing, and play with tactile toys. So OH reluctantly takes Andrew to these fortnightly groups, again because we want to appear keen. Andrew also receives fortnightly visits from a Special Needs Support worker (he has about 3m additional developmental delay as a result of a bout of epilepsy), and she has arranged sessions in a Sensory Room at the local SureStart centre, which he absolutely loves. (All of this kicked in around his first birthday)
