Here’s another mum’s story about being let down by audiology services in Ireland, after her son failed a hearing test at 9 months. Other parents also shared their stories on the irishdeafkids.ie site.
Charlie was 10 months old when the audiologist suggested glue ear was the underlying issue. I was told to return to the audiologist for another test and on the day of my son’s first birthday I sat with him in that office to be told he was probably deaf. I didn’t know where this new diagnosis had come from, what new information the audiologist had gleaned from my son by looking at him, but that was the news I got. And I left the office that day with no information, no help, no support and no clue as to what lay ahead.
We waited for appointments that didn’t arrive and the only thing we knew was that our first son was deaf. I bought books to try to learn more and went online for help. We finally found a deaf support agency and got some essential support but we still didn’t know what this weird unofficial diagnosis meant for Charlie and hadn’t seen anyone for more tests.
I had visions of Charlie going away to school, communicating through sign language and feeling alienated from his family. I was pregnant with my second son, and still didn’t know why Charlie was deaf. And so, like many other people living in this country, I had to turn to the UK and our private consultants here for help.
Hearing-Aids, Without Guidance
When Charlie was around 20 months old we went to an appointment in Tullamore to get his first hearing aids. We sat in a waiting room with four other families for over three hours. We went into the room and were handed two hearing-aids, told which was for which ear and that the aids were set (not to be changed) and we were bid good day.
No-one even showed us how to put the hearing aids in. We didn’t know they would beep and buzz if not in correctly. We knew nothing about ill-fitting ear-moulds or how the aids would fall out of his tiny little ears. We didn’t know how difficult this baby child would find using them. No-one explained anything to us and we were struggling as parents to cope with the situation.
Finding Beaumont Hospital
A referral for a BSER test at Beaumont Hospital was a different experience. Finally, people who spoke to us as if we had feelings and intelligence. Charlie’s hearing loss was diagnosed after several tests in Beaumont. He was given different hearing aids and we found support and a new understanding of what this all meant. We heard about cochlear implants and started on that long road to see if our son was a suitable candidate.
When my second son was born in 2006, there was still no neonatal testing in Portlaoise so we had to ask the team in Beaumont to test him. They did this when he was 5 months old and he is fine. Our third son was born in 2008. Again, there was no neonatal testing in Portlaoise so we had to endure more months of waiting to have him tested in Beaumont. He is fine, too.
Why Are Newborn Hearing Tests Not Routine?
The fact that new born babies are not routinely checked for hearing loss baffles me. It would save so much time and heartache for parents and the children with a hearing loss as early intervention is the key.
No parent or child should have to endure a fight for diagnosis. No parent or child should endure the cruelty and harshness of having ear-moulds made when the professional doing the procedure does so without compassion.
No child with a hearing loss should have their future compromised by losing out on valuable time – time for speech and language development or learning sign language, time to get used to wearing hearing aids if they work well, time for being assessed for a cochlear implant if this is an option.
The audiological service in this country needs three things:
- Universal new born hearing screening (UNHS)
- Early intervention when deafness is confirmed
- A formal support system for families with deaf children
These three things will make a world of difference to a child and their family.