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 (I have no idea how we’re meant to keep him silent and still for this) and are now also talking about 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