Possible deaf/Stickler diagnosis - help

[brw55]

Hi everyone,

I’m not sure what answers I’m looking for really. Just going through absolute hell with the unknown and wondering if anyone else has had anything similar - or just getting this off my chest!

Our son was born 3 weeks ago after a v difficult pregnancy and a c section with multiple complications, including him needing help to breathe. Shortly after he was diagnosed with a cleft palate and a recessed chin which was a total shock to us, then he failed his hearing screen but we were told this was v common with the cleft palate and it was likely just glue ear.

Fast forward 2 weeks and we have a follow up ABR with audiology. They spent 3 hours just testing one ear to tell us there was too much interference and the results were inconclusive so they couldn’t tell us what was wrong, but to “prepare ourselves” for the fact he may be profoundly deaf. They want him back in for a 5 hour test this time and are now also talking about wanting to test for something called stickler syndrome, although have said his eyes/face shape don’t fit the typical diagnosis.

Having all these unknowns hanging over me is torture. He’s so gorgeous and seems so healthy but I’m terrified for his future and struggling so much to cope. Has anyone else had anything like this with audiology? Or any experience of any of these issues? If your child was diagnosed as profoundly deaf from birth, how are they doing now?

I feel so isolated and alone at the moment when no one else I know seems to have any issue and I’m struggling to just get through day to day.

If you’ve read this far, thank you xxx

I'm sorry for what you are going through.

Dts failed 3 hearing tests each , traumatic EMCS at 31 weeks. They are both hearing.

I don't know about the other things.

You are in such a tough place right now and I am sending you every sympathy.

Your DS does indeed sound gorgeous and I'm glad his general health appears good!

My son has a very rare condition and I hear you about the loneliness, particularly when everyone else around you is seemingly walking a different path with their LOs.

My son was initially diagnosed with sensorineural hearing loss, moderate to severe, based on several audiology appointments. However, they freely admitted this can change as diagnosis not always clear when child is small, and it has. He is 18 months now and his loss has been downgraded as mild to moderate, with the issues being likely due to glue ear. It seems common for the fluid to drain and improve as the tubes widen with growth. DS was a nightmare to test, struggling to turn to the stimuli (poor head control) until a month ago - so the electronic testing, while it can be great, can only form part of the overall picture and I guess you might have to wait for answers with age - horrible and not easy.

We have a teacher for the deaf who visits us every few months and gives me advice and activities. This was put in place just after DS's first birthday, so you can start interventions very early should you need to.

I'm sorry I can't be of any more help.

Wishing you very much luck. Your DS sounds a sweetheart!

Sorry you're having such a tough time. I suggest going to the National Deaf Children's Society website - really helpful resources and they have a helpline where you can talk to someone who will understand what you're going through.
Also look on Facebook for your local national deaf Children's Society parent group - I'm sure they will also be happy to talk to you.
Wishing you all the best