Finding out baby Isla is deaf

I would like to take you back 7 weeks.  In fact, I would like to take you back 12 weeks.  Islas has just turned 3 months, so we are going back to the day she blessed us with her beautiful presence.

Isla arrived safe and sound, and dare I say it, quite easily, on the 15th June.  Her labour was quick and easy, and just as it started, it finished.  To show off, 12 minutes of pushing!  I do intend on doing a blog about my Induction Experience, when I find time, just to let everyone know how it went, and for those who haven’t been blessed with an induction, to hopefully provide you with a glimpse of what to expect.

So Isla arrived, and within an hour, we were hustled out of the room, as another labouring lady needed the room!  What I am getting at is, the standard checks, were done very quickly and we were left to our on devices.  Four hours after labour- I was discharged.

We all settled back into life very well with our new addition.  Isla was being a good baby, although breastfeeding was a bit intense, we quickly weened her on to bottles.  Our hearing test was booked for her at 5 days old.  She failed it.  The test consisted of a small earpiece being placed in her ear.  We didn’t think anything of it, to be honest, the health visitor gave us a lot of reasons why Isla had failed, so she rearranged for another appointment. The second time she came, Isla was about 3 weeks old, and due to the road noise, that is quite loud in our flat, she couldn’t get a good enough reading.  I would just like to add at this moment, that for all of the tests, Isla had to be completely settled…. what a nightmare that was, but we were lucky, as Isla was very good for them.  So from this she arranged for another Health Visitor to do a more advanced hearing test called an AABR- which is a test that tests the brain responses via three pads, stuck to her head.  And guess what- another failed test.  Although we were getting full confidence from health professionals that this doesn’t mean she has a hearing impairment, I did start to panic at this stage.  Maybe she was deaf?  The thing is, she jumped a few times to loud noises, and she settled well when I sang to her, so surely that’s not the case?  She was then referred to our local audiology centre to have the test repeated, in house, with better equipment.

Now at this point, as a mum, I did start watching her more closely than before, intentionally making noises to get a reaction. Sometimes she reacted, other times she didn’t.  What I did subconsciously, was prepared myself for the worse, and accepted that Isla was deaf- call it a mothers instinct, or a way to protect myself from the worse case scenario, but thats what I did.  Family members and friends were starting to question these failed hearing tests, to which I would lightheartedly reply with a comment that would ultimately prepare them for any shocking news that may be coming our way.

“Of course she isn’t deaf!” Is the reaction I was getting from friends, who probably thought I was going through some sort of post natal breakdown.

Moving swiftly onto ‘D Day’ (the D stands for deaf!).  So, my baby is now 5 weeks old.  She’s still tiny, but developing beautifully.  So I head to the audiology appointment, alone, as Ed was working.  I would like to add, that at this point, we were expecting a delivery of our brand new bed at 11am, and my appointment was at 8.45am, so I had assumed I’d be able to see to both duties on this day.  I was told in my confirmation letter, that it would only take two hours, so I had plenty of time to get home and wait for the bed.

Isla was very good.  Again, another appointment were she HAD to be asleep, or completely not moving.  But she was getting used to this.  We had another AABR test, with all the little probes stuck to her tiny head.  I had to hold her completely still, but at least we were going to get this done, once and for all.  About an hour into the test, I knew something was wrong.  Now I’m no expert, and Ive never seen any audiology graphs or mappings done before, but I could hear how loud the Audiologist was making the sounds, and Isla wasn’t flinching.  I didn’t panic, however, I could feel my phone vibrating under where she was lying, in my pocket, and I knew that I had been in the test room for quite some time, so it must be either Ed, or the bed deliverers.  Either way, I wasn’t going to answer and risk moving Isla, and make the test taking even longer than it already had.

The test comes to an end, as Im sure the audiologist can see that Im falling asleep- we were sat in a dimmed room, to encourage Isla to stay asleep.  She told me she was going to go and make a graph and then discuss the results- which in my head translated to, ”She has a hearing impairment, I am going to go and gather myself together, to figure out a way to explain this to you.”  I think when you work in health care, you get used to ways in which people interact and you become hypersensitive to verbal and non verbal communication- after all, thats my job! And something that I pride myself at being good at.  She only leaves me about 5 minutes before returning. In this time, my phone is going crazy.  Obviously I have missed the bed!  Its nearly midday!  Im quite ‘old school’ when it comes to my phone and I will very rarely pick up the phone if I am in anyones company, mainly because I think its rude.  So if I don’t pick up the phone, thats normally an indication that I am busy.  I think most people think I just ignore them, and I do.  But when I’m physically with you, I will not interrupt that time for a phone call. (Unless its important, of course.)

She returns, ”So the test indicates that Isla does have a hearing impairment!”  So this isn’t a huge shock to me at this point- remember, my sub conscience already prepared me for this moment.  I then get shown a graph.  Now lets bare in mind, that I have never seen or had any involvement with anyone with auditory issues, so this is all new.  The graph was plotted at several points.  She explains that people that hear between 0-20dbs(decibels), have normal hearing.  At 20-40dbs would be mild hearing loss, 40-60dbs would be moderate hearing loss, 60-80 would be severe hearing loss, and 80+ would be profound.  To be helpful, this little graph that I was shown had little pictures on, to represent the noise level- so rustling leaves would be 0-20dbs.  She is showing me Islas, and all I can see is a helicopter, a plane, and a dog barking.  She then announces that Isla has severe hearing loss.  My response,

”So how are we going to fix this?”

Its strange how my body and mind, has a way of being very clinical and switching off all emotions, to get to the point of a situation.  I feel at this moment in time I have my job to thank for this ‘hardening’, as the next steps that happen, allow no room for emotions and indecisiveness.

She explains that it can’t be glue ear, or a conducting issues, as she used a device during the test that would eliminate that as an option.  So as I said, I cut straight to the point and wanted a solution. The poor lady seemed so shocked, but she said she would take moulds and fit Isla with hearing aids, and she left the room to get the equipment.

Que- Emotional Breakdown.  I called Ed, who I was expecting to be pretty peed off, as the bed had obviously been and gone.  I announced the news in under a minute, and then hung up quite promptly as the Audiologist was back in the room, Que- stable, clinical Aleesha.

So she gets this foam, fills Islas ears with it, and quickly sends me on my way.  To be honest, I think I was practically stood at the door and she knew I needed to get out of that room.  We rearranged to go and pick the hearing aids up for the following week.  I left the centre and headed to my car, and called Ed back to explain in full.

So basically, I went in with a baby who could hear, and left with a baby who couldn’t,

who, the following week, would be wearing hearing aids.  I was devastated! How the hell has this happened?  I got out of my car, to find that my grandparents were at my house, as I was due to go out for a run with my grandad.  Them being there, was exactly what I needed.  I had a mini break down in the street, and when we got in the house, I broke the news to them too.  At this point, I actually knew, that the only way Isla would be able to hear, would be with Cochlear Implants, and I was absolutely devastated!  My dreams of another dancer were shattered. My granddad and I , went for our walk as normal.  I had so much adrenaline, that I needed it!  I can’t remember the conversation, but I remember one sentence that came from his mouth….

‘If you can’t fix it, don’t worry! And if you can fix it, don’t worry!”

This would be something that I would repeatedly have to tell myself in the weeks passing, after getting this news.  Not only to myself, but to other people.  And here’s where things get complicated. Now I have to, not only digest all this brand new information, but I am going to have to announce the news to friends and family.  The thought of telling people something was wrong, with my brand new, extremely beautiful, baby, was the hardest thought ever.  I didn’t want anyone to see her any differently, I didn’t want anyones pitty, and I definatly didn’t want to actually tell anyone.

I didn’t want to tell anyone?

I asked Ed to keep it a secret. I wanted to fully understand before I had to start announcing and explaining.  I know what people are like.  Its natural that as humans we act a certain way, and I knew that some peoples reactions, where going to push me over the edge.  And as predicted, they did.   I am a complete culprit when it comes to situations like this, and maybe because I know myself so well, I knew what to expect.  The ignorance, that I would entail in the next fews weeks, would be incredible.  I feel that the thousands of information books on hearing loss that I was supplied with, should have had a whole chapter on dealing with this issue.  What I expected people to ‘Google’, they didn’t, And I turned into a hearing loss educator.  I wondered whether the people firing question after question, ever wondered, how that would make me feel.  After all, my baby wasn’t deaf two days ago! Luckily, we had a camping holiday booked that weekend, which would give me time to digest all this new information and prepare myself for the following comments… At this point, although it sounds as if I am having a moan, I would like to add, that some of these comments make me laugh, but some of them had me completely questioning all of humanity!

‘But she’s so pretty!’–  This was a popular comment! As if, her looks would have indicated that she was deaf, followed by the next comment;

”She’ll have long hair like Livi, you won’t even see the aids.” – As if she’ll be able to hide the fact that she is deaf? I didn’t like the fact that people would want her to hide who she actually was.

‘Oh, she’s not got her hearing aids in?” -Now this is a tough one.  A lot of the people around me didn’t understand why she wasn’t wearing her hearing aids, all of the time.  For me, it was common sense, that in a busy environment, they would make no difference at all.  Especially that she has sensory hearing loss, which is a fault in the mechanics of her ear.  Lets also take into consideration, that she’s 6 weeks old, and that Im learning to parent for a second time.  Don’t worry guys, Im not deliberately not letting her hear anything lol.

‘But can she hear…..?” -Ummmm, No.  When I really simplified it for you and said she was ”completely” deaf, I meant, completely.

Randomly claps, or bangs!– Now Isla will literally learn to hate these people.  As well as the people that talk loudly or do ‘over the top’ sign language at her.  If you don’t know what it means, don’t do it!

”You should count yourself lucky she doesn’t have…….’‘- I simply have no words for this statement.  However, I do count myself lucky, to have a healthy baby, something that not everyone gets the opportunity to have.

”Well, I can tell she’s not blind!”– What???  Lets think about this, she is deaf, and has hearing aids.  Do you not think that if she had an eye sight issue, she would be wearing glasses??  Cummmon People!

”She must be able to hear something?”– Maybe you would like me to say yes, to make you feel better? I don’t know lol.

The be all and end all is, as humans, we say stupid things, and half the time don’t even realise!  If I can do anything by blogging, I would like to educate and inform people of the ins and outs of raising a child with hearing loss.  As well as raising an older child too.  As soon as we found out the news, we went straight to the internet to educate ourselves and to gain awareness on what life for Isla is going to be like.  And, at 12 weeks old, I can now tell you, that it will be no different.  She’ll have Cochlear Implants that will allow her to hear at 12 months, but for now, she is completely deaf.  Does this affect our daily living with her? No.  As parents we are just a little bit more aware of our environments and the sensory impact this may have on her.  Our focus is completely on her operation, and rehabilitating her.  How are we going to educate people in how they communicate with her.  As a baby, I do have to admit, that she is very easy, I can take her anywhere.  This is the easy part, other mothers in the same situation have told me.

Isla couldn’t have fallen into better hands.  She has a wonderful family, and support network.  She has not only inspired me, but as everyday goes by, she teaches me something different.  How we communicate with each other, is completely taken for granted.  What am I doing with my hands?  What expression am I showing? What distractions are there?  All I want to do, is educate others, and let them know, that its ok.  We are ok.  Isla is ok.  So that being said…..

Let me introduce to you, Isla Lloyd….

Isla is Three months old.  She’s very vocal, and usually very happy- as long as she has a full stomach.  She enjoys other children and likes to babble away to them.  She cries VERY loud.  She enjoys the beach, and long walks.  I predict she may want to be a dancer- based on her smile when she enters Olivia’s dance school and the utter pleasure on her face when I force her to watch Dance Moms, but Im secretly hoping that she will be a Pageant baby! Oh yeh, and she has a hearing impairment.

Looking forward to letting you all know how we get along on this new journey.

With Much Love

Aleesha xx

 

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