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.
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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Sam
June 25, 2015
That’s shocking behaviour from the professionals- sadly it was the same forty years ago – apparently the doctors kept telling my Mum that I was probably just finishing a cold, but she persevered and got the correct diagnosis in the end!!
Nicola
June 26, 2015
Hi Sam, we got told that many a time! It’s a shame things like this still happen, but i suppose all we can do is be great full for the help we do eventually get! Thank you for taking the time to read my daughters story. Nicola x
Vicki
June 25, 2015
You were right to continue until you got answers!! We were lucky that our daughter’s profound deafness was picked up by the newborn screening at 6 weeks and she has gone from strength to strength. She is now preparing to go into her final year in primary school, then onto high!! I won’t lie, I’m petrified but my gut instinct is she’ll be fine. Hope your daughter continues to flourish xxx The Asquith Family xxx Leeds xxx
Shell
June 25, 2015
My son got Same has ur child took them ages Liston too me my son hear aids not working now he getting cohlaer implant
mike
June 25, 2015
This sounds very like how my mother struggled in the sixties, with three sons all deaf and hard of hearing. My mother knew there was a problem with my elder brother but fought to get the professionals to accept this. Then I came along, same thing happened. They finally accepted there was a problem when older brother was a teenager, and I was about 8yrs old. I was put down for deaf school, but it was too late for my brother. I attended deaf school at 11yrs old and when my youngest brother came along….straight into nursery school for h.o.h deaf. It really makes me think about how my mum battled with the powers that be for so long…only to be fobbed off. Mums DO know best…. never give in!
Amanda campbell
June 25, 2015
My daughter was 12 when she was finally diagnosed as being partially deaf she had continual ear infections and was never away from the doctors I asked more than several times for a hearing test I knew something was wrong finally she was feferred and was diagnosed I still felt like a bad parent but she was fine more relived and copes remarkably with it but it shows again that if you think something is wrong keep pushing x
Selina
June 27, 2015
Hi my daughter was 15 when she was diagnosed , audiologist reckon she had been lip reading with no problems , up until the age 12 , this is when she started to struggle . She hated high school and started doing anything to avoid it , to cut a long story short we ended up with social workers , going to children’s panels , being forced to visit a children’s home , to show her that this would be where she would go if she never started attending school . When she was diagnosed it was a relief and it did answer all the whys but she has missed the most important part of school , exams and qualifications. I hope your daughter continues to use her aids and use all the support that’s out their to help her meet her full potential during school. Good luck
Kiya
June 25, 2015
You was right to follow your instincts!!! I was diagnosed at the age of 5 years old with moderate hearing loss the professors kept saying I was fine and as I grew older I understood how the test works and pretend I could hear the noise! I have many years of speech and language therapy and there are many different troubles along the way my English was very poor as I was two years behind but with all the support I still got my grade C in English and as I’ve grown up and being I love it because it’s a part me and makes me who I am as well sign language is awesome!
Nicola
June 26, 2015
Hi kiya, thank you so much for your comment. It’s very comforting to read how you feel about your deafness! I’m petrified about what the future holds for Imogen but I don’t doubt for a second she will do just fine!
We are currently learning sign language and I would like Imogen to be able to speak both English and use BSL!
Thank you for taking the time to read my daughters story! Thanks, Nicola
Shell
June 25, 2015
My son got no hearing not ear aids I new sum wrong with my son he had eat aids from too months I tell them not working took now believe me he nearl too he having cohlaer implant now
Lorna Thorley
June 25, 2015
Really interesting read. My heart really does goes out to you and well done mumma for persevering xx I am the mum of a 26 month old girl who is profoundly deaf in one ear and moderate/severe in the other. She failed her first screening at 4 weeks and was fitted with hearing aids (not very good ones though) by 4 months. We are British but had her whilst living overseas and my husband and I often say we think we would be better off back in the UK where there is some structure and process in place within the NHS. The process here wasn’t easy, we have had inadequate support and information and have since learned that some of the processes for testing here (using anaesthetics and sedatives) are considered unsafe in the UK. I feel like every step I have had to fight, fight, fight. Having read this it makes me think we would not necessarily been better off in the UK after all. Thank you for sharing and best of luck to Imogen for September.
Anna Kirton
June 25, 2015
Fantastic you got a result finally after so long….I wasn’t diagnosed until I was 2 1/2 years old, with moderate/severe hearing loss in one ear and profound loss in the other. I was fitted with a hearing aid and received intensive speech therapy (in the 1970s) , then went on to mainstream school all the way throughout – I won’t pretend, it was very tough at times but it prepared me for life in the hearing world. I am now mum to a 3 year old who apparently has no hearing loss but has to understand that his mum has her hearing needs. I have also learnt to speak fluent Italian along the way – it’s a lot easier than French to lip read!! Just to say anything is possible……x
Rebecca
June 25, 2015
What an amazing woman and mother u are , and what amazing little girl ! She will just flourish now and I know the road may be a little rocky at times but after reading your story she is just gonna keep getting better and stronger and before u know it u will be begging for just a little bit of piece and quiet
Stay strong and together !!
P.s say a big hello to Alex for me , we went school together
Nicola
June 26, 2015
Thank you so much for your kind words! It really does mean a lot! And thank you for taking the time to read imogens story! Hopefully by publishing this, we will have raised a little more awareness.
Alex says hi back!!
Thanks again, Nicola
MarlaCrews
June 26, 2015
My mother could have written this, but mine wasn’t officially found until I was 5, almost 6. Otherwise, it echos and rings true to my story. I was born in 1975, well before newborn hearing screenings.
JibberJabber Communication and Interaction (Emma)
June 26, 2015
Nicola as I read this blog I only felt frustration for you and your daughter at the total lack of professionalism and support you were given. A mother always knows best despite being told most of the time the contrary. I spent 12 years as a communicator and now I teach baby sign and early years sign and also support children with communication needs. I understand the frustration and heartache a lack of communication between child and parent can bring. Your little girl is lucky to have a wonderful strong mother.
Nicola
June 26, 2015
What a beautiful message, thank you so much! And thank you for taking the time to read imogens story! I will continue to fight and persevere! Only yesterday we got told they are finally going to refer Imogen for an assessment for Cochlear Implants! I finally feel we are starting to get somewhere! Like any mother I only want what’s best for Imogen, she deserves it!
Thank you again, Nicola x
Cathy
June 26, 2015
I enjoyed your story Nicola! It took me back to the 60s when my mum took me to be tested at the audiology centre. I was already deaf through having had measles, but only mum knew I was deaf, everyone else didn’t believe it!
We traipsed up n down to audiology until finally around 6 months to a year of traipsing to and fro, the professionals agreed with mum that yes your daughter is deaf!!!
How we still have professionals behaving the same way 50 years down the line is baffling!!! Most new borns are diagnosed from a few weeks or months old.
I wish you all the best with your lovely daughter and good luck with the cochlear implant. I know they are becoming very popular although I don’t have one myself as i am hanging on for stem cells, as they are almost there with them………!!!