Nicola Clarkson: Why I was relieved when I was finally told my daughter was deaf

Posted on June 25, 2015

On 31st August 2011, 17.52 I gave birth to the most precious beautiful little girl I had ever laid eyes on, Imogen Rose.

I promised myself there and then, I would move heaven and earth to give her the best life possible. Little did I know what Imogen was going to experience the first few years of her life, would not only be difficult for her, but a huge battle and learning curve for me.

1st September 2011, I hadn’t slept and I think I was surviving on pure adrenaline! Imogen had slept like a dream! She woke only once and slept for 8 hours! I thought: this newborn baby lark was easy.

Later that morning a lady came around to do a new born hearing screening.

I wasn’t even aware this was a thing, I just got told it was routine. The lady did what she had to do, the whole time I was just waiting to hold my little girl again. When she finished she told me they hadn’t got a response from either of Imogens ears.

I think a look of pure panic came across my face, what was this woman saying? My little bundle was perfect. She then went onto say not to worry and it was quite normal and was usually down to a fluid build up – especially with Imogen having being born by emergency c-section. I accepted this and carried on enjoying being a first time mum.

Imogen on the day she got her hearing aids

Imogen on the day she got her hearing aids

At 8 weeks old we had an appointment at the hearing and balance centre at Leeds LGI for a check up. During the appointment the audiologist had a look of concern on his face the whole time.

Once he had finished the tests, he told us Imogen had a mild to moderate conductive loss, but again he said not to worry as this was probably still fluid.

When we left I was devastated, I had no idea what ‘conductive’ meant, he hadn’t explained anything, just sent us on our way and told us not to worry and they would send another appointment through for when she was a little older.

At around 6 months old we had the same test, with the same results.

Again nothing was explained and we just got told they would monitor Imogen. But by this point I had done my research. Something wasn’t sitting well with me but as I had never experienced something like this before, I listened to the ‘professionals’ and put my concerns to the back of my mind.

I had started taking Imogen to mother and baby groups, and I noticed that as much as Imogen was meeting all milestones, she didn’t respond to her name and she didn’t babble either. I think then I knew in my heart of hearts her ears weren’t working properly.

The tests carried on, us being told Imogen wasn’t cooperating, that they hadn’t had conclusive results. Then around 11 months old, we were told that Imogen had perfect hearing!

They said that they were discharging her from their care and ‘not to worry, we are very impressed with Imogen today and we have no further concerns’. As you can imagine we left the hospital delighted! My baby could hear!

Over the next few months we carried on as normal, Imogen celebrated her first birthday and she started walking. Still though, there was no progress with her speech, no sounds, no babbles, she just shouted.

I had mentioned it to our GP and I even spoke to our health visitor. Our health visitor agreed it wasn’t normal, and that she would come and pay us a visit. During the visit, she told me there was nothing wrong with Imogen, she put her delayed speech down to me not interacting enough with her, basically called me a crap mum.

I was 19 years old and doing my best! I was heart broken. She sent a social worker round to assess us, who then said she had no idea why she was there, and she recommended I took Imogen back to the GP to be re-reffered to Audiology.

It took me until Imogen was 18 months old to get anybody to listen to me.

I kept being told I was over protective, that some babies were lazy and that she would be fine. I finally got a referral to community audiology, where after 10mins of testing the audiologist stopped, asked my opinion and said that she reckoned Imogen had a sensuri-neural bilateral severe-profound loss.

Imogen was due to have grommets the following week so a request was sent through to have a hearing test done whilst she was under anaesthetic. Finally we were getting somewhere! Her appointment came round pretty quickly and to be honest, I was excited, excited we were getting somewhere and excited we would get answers! How wrong I was! The test was INCONCLUSIVE, apparently due to interference.

Now bearing in mind Imogen was only 18 months old at this point, we carried on going for routine check ups at audiology, constantly being told the results were inconclusive. It was a constant battle, and I was starting to get disheartened, was it my fault? Was the health visitor right? Was I a bad mum?

Then in March 2014, Imogen was to have another test under anaesthetic, one of her grommets had fallen out so they said ‘if it makes you feel better we will test again’. I got told she would be in theatre for around 25 mins.

45 minutes passed and there was still no word, what the hell was going on?

Our doctor then came to find me, and told me the results were conclusive. Imogen did have a permanent hearing loss and they were taking moulds, she was to be fitted with hearing aids in 4 weeks time!

I collapsed on the floor in relief! People often ask me if I was upset when I found out, but if I’m honest it was a relief.

I think in my heart of hearts I had always known, but now the professionals also knew and they were going to help! My baby girl was finally going to get the help she needed!

The four weeks passed quickly, and the day for ‘new ears’ finally arrived!! She HATED them!!

Again I was disappointed and sent home with two hearing aids in a bag and got told to persevere. Well thats what I did and the response was amazing! We put them in, switched them on and the look of delight on Imogens face melted my heart! at 2 years and 7 months my baby finally heard my voice!!!

Now Imogen is nearly 4 years old, and getting ready to start school in September!

She is very sociable and such a happy child! There isn’t a day that goes by my heart doesn’t swell with pride. I wont lie, its difficult – my 4 year old daughter has the speech and understanding of an 18month old, but Imogen has never let this bother her, she takes each day in her stride and makes every person smile who meets her! The best gift anyone gave her was her ‘pink ears’ she demands them every morning, and as soon as they are in, her face lights up.

Its taken me a long time to accept that Imogen will need extra help throughout her life, and that things will be more difficult for her than other children.

I felt as though I had failed her. I didn’t want to talk about her deafness, I didn’t want her to be known as ‘the deaf girl,’ so I kept quiet, and then my fiancé and friends convinced me to write this down.

It feels good to get it off my chest and if just one person reading this feels a little sense of relief or has a bit more understanding, then I’m happy I told her story!

Please please, if you have any concerns or a gut feeling, please follow your instincts! If I hadnt, god knows how long we would have waited before we found out!

Not only is Imogen my daughter, she’s my best friend. Love one proud mama!

My name is Nicola, 23 years old and mother to Imogen Rose 3 and Emiko Lily 11 months. (Who at this moment has a conductive loss in one ear- unknown cause) We are from Horsforth, Leeds.

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