Hi palidarium

Thank you for starting this thread to connect with parents facing similar situations.  I am sorry that you've not had any comments yet - Your Community is still very new and new members are joining each week. 

In case you have not read it yet, there is some information on our website for families about Auditory Neuropathy Spectrum Disorder: https://www.ndcs.org.uk/documents-and-resources/auditory-neuropathy-spectrum-disorder-information-for-families/

If you need any further support, please feel free to contact our Helpline team. 

Best wishes!

Hi. Our son has ANSD. He is 2.5 yo and was diagnosed at about 7 weeks old. If you are on Facebook there is a group called 'parents of children with auditory neuropathy spectrum disorder ' (or something very similar). That has been a great source of information for me. 

I am also happy to chat to you about the diagnosis if you like. It's such a confusing diagnosis I think! Hope you are all doing ok, Bryony 

Hello @palidarium, Our youngest son was diagnosed with ANSD following his newborn hearing test. He has profound hearing loss in his left ear and until recently glue ear in his right. He is now 7 and thriving. Very happy to chat and share more. Like you @mrsh, we found it a tricky diagnosis to understand and to explain to others but have had wonderful support from his consultant.

My son is 3 and also has ANSD, he was diagnosed as having this a few weeks after birth and is profoundly deaf in his left ear due to an absent auditory nerve and has a mild loss and intermittent glue ear in his right ear. 

My son was diagnosed with ANSD from birth, he was born pre-term 24 weeks. 
ANSD is not a straight forward diagnosis and as the child gets older it can change or get worse. My son now 3 years old he has profound hearing loss on the right ear and severe hearing loss on the left year. The hearing aids are not working for him and has not developed speech yet, he has been referred to specialist hospital for cochlear Implants which should help him hear sound and speech. 

I think it's a waiting game..

what level of hearing loss your child has and do you know what might caused it? 

Hello. ANSD can so confusing to get your head around, it took me months - if not years - to fully understand it and to be honest, I understand now that, until my daughter, now 4 and 1/2, is able to explain how it affects her personally, I won't know how it affects her specifically... And that's ok! My daughter later got a further diagnosis of being profoundly deaf which was, unexpectedly, a relief as it was much easier to understand!

Please don't put too much pressure on yourself - having a baby is exhausting without having to get your ahead around Auditory Neuropathy Sepctrum Disorder. If you do feel up to it, what I would recommend is just find something that works for you in terms of understanding ANSD generally... I love to read so bought books and read up online. I think Aussie Deaf Kids has quite good, clear information. I found a lot of stuff was very medicalised as opposed to being written for parents. If you prefer to talk to people do you have a Teach of the Deaf, Audiologist or Paediatrican you feel comfortable going to to talk through things with when you're feeling uncertain? Or local Deaf Children's societies? I remember how deseperate I was to meet another Mum with a child with ANSD at my local coffee morning (pre-covid of course!) and eventually I did! I used to skim every page of the Families magazine each time a new one came out too to try and find a child who had ANSD featured!

In the early days, I spent a lot of time thinking about what the diagnosis meant, what WOULDN'T my daughtrer be able to do. What helped me was thinking about, about, and focusing on, things I COULD do to support her. Have you heard of Baby Beats? I'm sure there's lots of info online. It's a music and listening programme from Advanced Bionics but is for anyone, not just Cochlear Implant users. I loved doing this with my daughter, especially the music when she was a baby (keeping in mind she had little to no access to sound, it was still lovely for both of us) and it is suitable for both babies and toddlers. The animal noises and transport were fun when she was older. I also did sing and sign classes because I was worried about commuincation and discovered that loved it whch lead me on to learinng BSL. Finally, there's a scheme from Bookstart called Bookshine which is for babies who are deaf or blind - my local library gave us the pack and later the Teacher of the Deaf if you havelt had one already. 

ANSD can feel scary as there's so many unknowns. You're not alone :) I hope you have plenty of support around you and that you're enjoying your beautiful litlle boy xxx