These audiology appointments very quickly became the bane of my life!
Teddy failed the routine new born hearing test, but I was able to come up with plenty of reasons to reassure myself of why this was nothing to worry about.
1) The ward hostess was being quite noisy while the test was ongoing- maybe the background noise interfered.
2) Maybe it was just a bit of congestion from the water birth which needs time to go.
3) I read a (probably rubbish) article about babies failing their new born hearing test after spending more than 72 hours in Special Care Baby Unit (SCBU).
I was reassuring myself that we would attend the scheduled appointment at the Audiology dept of our local children’s hospital and everything would be fine.
The Christmas period was covered by a bit of a grey cloud, although I was outwardly confident his hearing would be fine, there was still a devil in me that asked ‘what if?’, plus the challenging feeding had continued.
The first appointment confirmed permanent mild/ moderate hearing loss. I was gutted! We got home and I stood in the kitchen sobbing, making up every worst case scenario in my head. What if the kids at school are horrible to him? Will it affect his development or learning? We will have to make sure he has a thick skin and can stand up for himself, or make sure he is a ‘cool kid’! Blissfully unaware of the real shit storm we had to come, I thought my world had ended.
For this particular type of hearing test, Teddy needed to be asleep, and I mean fast asleep! To help with this we were advised to bring Teddy to the appointment tired and hungry, which is great if you have a text book child. But if you have a child who doesn’t like sleep and doesn’t like milk, well your screwed! And I was even more screwed when the staff tried to ‘help’ by making the room warm and dark! Teddy may not have liked sleep but I did, so this environment was like torture……..pass me the match sticks!
That journey was a rollercoaster in itself. I was desperate to take Teddy swimming but was advised not to, to lower the chances of him getting glue ear which can make hearing worse temporarily. Only he got it anyway, which resulted in plenty of inconclusive tests coupled with what appeared to be hearing loss that fluctuated between mild/moderate and profound.
It almost became standard procedure that each appointment would mean more bad news, at first I really struggled with it and I would feel nauseous the night before his appointments. I started to really dislike the staff there, obviously it was nothing personal, but it was hard to only ever hear bad news from the same people. As things progressed and we had bigger fish to fry, the girls grew on me (they were lovely really) and we were soon talking about the best places to get your eyebrows micro bladed.
After 26 hours of hearing tests, 2 consultant appointments, 2 rounds of blood tests, 1 MRI scan and 1 moulds appointment, Teddy finally got his hearing aids when he was 5 months old, and he loved them….in his hand….or on the floor. Before he started to regress, I spent plenty of time searching the corridors and grounds of the hospital for a rogue hearing aid that had been chucked out of the pram. The repetitive game of in, out (of his ear) shake it all about became less than boring let me tell you.
I hoped that hearing aids would form some type of miracle. Maybe now that he can hear he will respond to me, or smile at me, or even look at me! I was over the fact that he had refused my boobs but I was really starting to get a complex now that he wouldn’t laugh at my jokes or make purposeful eye contact with me.
There was no miracle.
OK, there were times he might have gotten a fright if there was a loud noise, and he seemed to pause if Adam would whistle right by his face (much to my annoyance-and he still whistles all the time now).
But there was no major change to his development. I remember one time, Adam and his friend cheered really loudly when Liverpool scored a goal. Teddy cried because he got a fright and I was made up! Tight I know! But at least he heard it.
Like every Mother to their child, I was Teddys biggest fan, but I think it’s only now he’s not around I reflect and feel like I was his biggest critic too. Adam was always the optimist and me the pessimist when it came to his development. I look back through videos and it seems much clearer that he did respond to things- whether it be a familiar smell, noise vibration or a brush of Adams beard; he might have made the smallest noise, blew a raspberry or moved his head, either way it was a reaction and at the time I couldn’t be convinced. I wanted to see a clear reaction to something ten times before I could agree to it.
In 2019 Teddy’s hearing deteriorated permanently to the point where he now needed cochlea implants. As his health needs increased, hearing aids became bottom of the list. I was exhausted physically and emotionally and my priority was to do things that kept him alive and well. The hearing aids we had were unlikely to be helping so inevitably they were rarely put in. Which meant I no longer had to try and match them to his outfits 😉.
I had some major Mum guilt (AKA guilt bitch) about this. Like, I know at this point there was 3 hourly tube feeds that needed to be made and administered, blood sugars needed to be monitored 5 times a day, chest physio twice, four lots of nebs, seizures to manage, various medications throughout the day, oxygen saturations to monitor and oxygen needing titrating. That’s before we talk about getting washed, dressed and actually moving out of the house. BUT, if the hearing aids would give the tiniest but of stimulation then……
We decided not to go ahead with cochlea implants. It’s a really rigorous process which takes place in Manchester, which I know isn’t a million miles away, but when you struggle to keep your own airway open lying down, 2 hours in a car seat in one day, on lots of occasions didn’t feel appropriate. The process also includes an MRI scan which Teddy would have required a general anaesthetic for, and then a further general anaesthetic for the implant itself. 2019 was proving to be a tough year for him and there was some thought as to whether he would be fit for an anaesthetic at all.
On the plus, we could walk around the bedroom while he slept not having to worry about waking him……and not many parents can say that, so let’s take the victories!
Lets play a game……have a look at the photos attached to play ‘spot the hearing aid’.
Tune in next time to read about when we got Teddys diagnosis.