FailedNewBornScreening

95944fa7-dc0f-43e9-a21b-c0ae68dbd1edSince my first born, i think I had felt apprehensive throughout the pregnancy with Livy that I wouldn’t feel an emotional attachment straight away, I was petrified the black cloud that shaded my first time as a mother was lingering, ready to pour over what should be new found happiness and content.

Soon as Alivia was placed on my chest after what seemed a life time waiting, due to being stitched up from the c-section. I gasped and sunk in all her little features, her tiny perfect nose, small body which seemed weightless compared to Luka-James, my first child. Her long fingers with perfectly shaped nail beds. She smelt beautiful like all newborns do. Feeling her on my skin made my body relax, we’d done it.

Produced a beautiful, healthy small human. Every ounce of me filled overjoyed, with love.

For the first day and night we spent together, I’m sure many other mums will agree it goes so quickly. Your shattered, in pain, zero sleep and constantly feeding. But some how your body is just programmed to run on love.

It was day 2 when I had a pang of anxiety. My mother dropped a can of coke onto the table which was next to the hospital cot. And Alivia didn’t startle, turn or cry. Completely oblivious. I put it down to being 3 weeks early perhaps their reflexes aren’t as strong.
When my first born was a few hours old, everytime someone opened the steel bins and left it to shut itself, he jumped.

It was the next day the audiologist came round to do the newborn screening, she hooked my tiny little girl up to the device and reassured me everything should be fine, she failed one ear – but I was told it could be due to the back ground noise from other new parents gushing about their new babies. She asked them to be quiet and we resumed the test. She failed again, while doing the tests she was fast asleep completely unaware.

The audiologist said she would come back in a few hours and retest Alivia once the cubicle across had settled down and a bit quieter…

Two hours passed. I was beginning to feel riddled with guilt. I texted my mother asking her to get to the ward sharpish. I needed her there beside me to reassure me what ever the result, it would be fine. I could manage like she had, it didn’t change my thinking of this newborn baby only just over 24 hours old had a life of silence waiting for her.

My heart broke. My eyes stung like they was being tickled with stinging nettles. My throat formed a lump threatening to strangle me.
It was my fault.. She failed two more screenings.

Then she went onto another test, which went through any fluid or congestion in her ears, as she was a csection baby and early this was a possibility… Her tiny head was paired with two huge blue earmuffs, again she didn’t wince or startle. Blissfully unaware.

Failed – refer to audiology.

The audiologist apologised and said she will grab her diary to fit us in with an appointment the following Tuesday. (It was a Thursday). And that was that.

I waited until she left my cubicle, I was left with my mother standing beside me who’s face had turned red and eyes beginning to flood. I knew she was holding it in. Trying to be strong for me. Bless her, she’s not one for dealing with emotions.

I was given no leaflets, nobody to talk to after, nothing reassuring to read or success stories from the main investigation. Absolutely nothing – I was left bare with the unknown, just emotions and dreaded guilt…

Finding out that your precious baby, that you’ve spent 9 months lovingly growing and vowing to protect in your body, is some what not ‘perfect’ by the standard you are accustomed to is hard, you experience a range of emotions within seconds which isn’t ideal on top of your adjusting body, hormones, pain from surgery and tiredness from spending the first 3 days together with your newborn.

You’re hit with a pang of guilt, sadness and overwhelming feeling of protection. You blame yourself instantly and worry If your partner secretly does too. After all it was me she inherited her deafness from, I have made her life a challenge. I still live with that tiny guilt now, which prickles my eyes with tears when I think about it.

I thought to myself, was it something I done or could have done different while she was growing inside me, did I do something wrong? Should I have lifted that box? Eaten that thing I possibly shouldn’t have? Should I have joined yoga or take all these fancy supplements?
When in reality the life you spent your first few weeks on leave, dazing about what life she will have, Job she will do, what will her personality be like… Isn’t the life you originally planned, her path has taken a little different turn to what you originally dazed about.

After we was told Livy was needing to be transferred to audiology, with failing her screenings and needed a in depth investigation into her hearing loss. There was a 4 day wait until her first appointment, instead of enjoying the first week of her life I must have spent my days on google searching for things I could do, reading forums if the baby’s hearing came back and everything would be ok at the first appointment. I drove myself crazy. I didn’t want my beautiful little girl to face such adversity at such a young age.

I truly believe there is a grieving process when we are presented with what we perceive as ‘negative’ news about your precious little baby. With any challenge presented, it takes time to digest what you’re presented with and come to terms with the reality.

However time is something that cannot be spent mourning on your own feelings, within 6 weeks Alivia would be fitted with her hearing aids. It went so quickly, we had no chance to digest what was happening, what would happen and how we would bring up a baby, a child, to guide her into a strong independent woman. There is no space for slip ups.

With any aid your child is fitted with, unfortunately the parenting is not handed with a training manual. You’re on your own… Or so we felt.

Having sensory hearing loss myself, although not as severe as Alivia’s is, I want to express that deafness is not harmful, it doesn’t impose life threatening challenges and I cannot express it is nothing to be ashamed off! I spent years trying to hide my ears spending a fortune on hair extensions to hide from potential new friends or boyfriends. I didn’t want to be seen as weird, disabled or different.
I wanted to be accepted, liked and loved. Just like every other young teenage girl, I wanted to experience what they was. I so wish I didn’t waste my teenage years pretending to be something I wasn’t. I wish I had the strong attitude of, this is me. Take me as I am, or miss out on great loyalty.

Your baby is perfect, created perfectly and has a life perfectly planned. Now, as a parent it is upto me to ensure she feels perfect.

Perfectly normal, perfectly accepted and perfect the way she is. Don’t hold back, be proud of them.

In my next entry I will go into detail about her appointments at audiology. There are some lows and highs at each one, But we take each one as it comes. Also the challenges we face as she’s growing up.

LADDSYNDROME

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A little about me. 

At a young age of around 11, I was taken to a hearing test at my local hospital with my mother. I remember not really understanding why I was having to go through this, confused and quite upset. 

I sat and completed the test, where you press a button every time you hear a ‘buzz’ or ‘click’ through head phones. After, we sat together with a consultant, everything seemed abit fuzzy and my mother was crying uncontrollably. Admittedly I had no idea what was going on, nor did I have any understanding of what laid ahead of me. 

I had been diagnosed with moderate to severe hearing loss, and I was transferred to Great Ormand Street hospital and the Royal ear nose and throat hospital in London. For the next 9 years I frequently attended both of these hospitals for investigations, as to discover why I lost my hearing at such a later stage of my childhood. 

I struggled with being prescribed hearing aids at such a crucial age of 12, I was starting senior school –  which is a big mile stone in your life alone. Yet I was having to face people I went to junior school, with these new hearing aids that was a in the ear type mould and stuck out like a sore thumb. I felt humiliated, degraded, ashamed and I refused to wear them and took them out soon as I arrived at school. 

At the age of 16, I was finally diagnosed with LADD syndrome. 

* lacrimo-auriculo-dento-digital syndrome

This is an ‘extremely rare genetic disorder, only 50 cases since 1967 have been reported in the world.’ 

I have the typical characteristics of cupped ears, hearing loss, dental and eye problems, small thumb digits and my kidneys are affected by this condition. The syndrome can affect many other parts of the body. I am quite lucky to just carry just a few of the smaller characteristics. 

Alivia so far has been identified with the cupped ears, hearing loss and digits, she’s currently to young to be diagnosed with any other characteristics, these will be picked up as she gets older. 

What is it like to be a ‘normal hearing’ person, to live a life in silence? 

Firstly I want to express that those two aids that I held such a grudge against most of my teenage years, have turned out to be my best friends, my life and apart of me now. They have allowed me to lead a ‘normal life’, I can hear my son call me mummy. I can hear my partner tell me he loves me daily, I am able to tend to my children when in need, I am able to work and provide a living for my family. I am able to be what ever I want to be, with these. They may look or feel unpleasant. But they will be accepted as apart of you, by the people that are worthy to be in your life. 

I miss the simple things in life, all hearing people take for granted. 

The birds tweeting on a summers morning, hearing your siblings argue or your parent hoovering on Sunday mornings. The comfort of knowing what’s around you, swimming and hearing the delight of youngsters squealing, enjoying themselves. The feeling of awkwardness while in the hairdressers and having to take your hearing aids out to have your hair washed, the anxiety you feel when you have misheard someone and panicking they think you’re stupid. 

When you wake up without your hearing aids in, it’s almost like the world is on standby. 

Dead, Motionless and lonely.

It is my absolute mission to empower Alivia-Ellen, so she doesn’t spend her days feeling so down about her special difference. I want her to not look at life like its an obstacle, but just a hurdle she can succeed but in a different way to others.

ABILITYINEVERYDISABILITY

 

34b27454-e450-4591-a4d8-cbbfd3673288Sometimes you just have to stop and be thankful for life having different plans for you, than I had planned for myself. I have been blessed with a miracle. Being a parent to a baby born with a disability, in a nutshell is – 

a circle of emotions on repeat.   

At first I felt awful and blamed myself for the diversity she will face in her life, I wasn’t sure I could adapt to parent her and cater her needs, but motherhood is such a powerful beautiful thing. I’ve learnt to cherish and admire the person she is becoming, not who I thought she would be, whilst developing in the womb and fantasising how her life will be (what wasn’t meant to be.)

I feel lucky that In fact she has turned out to be the teacher of my life, turning me into the best version of myself.

My aim in writing this blog, is to provide comfort and reassurance to young, new, experienced mums who discover their baby has a form of disability, like i did myself. 

I will cover in detail the beginning of our journey. I just wish I had something inspiring, comforting and reassuring to read after being told my daughter had failed three newborn hearing screenings, facing a life of profound deafness. I laid there with my less than 48 hours old daughter, sobbing in my cubicle, clutching her tiny 5lb 2oz body to my chest feeling to wrap her in every ounce of comfort and protection I could provide. 

Gently whispering, ‘I’m so sorry’…  

Throughout this blog you will notice I am a FIRM believer in this quote:  

‘There is ability, in every disability’. 

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Welcome

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A late twenty something mother of two boys and a profoundly deaf diva of almighty sass.

in between splitting spontaneous sibling wars, curating pillow forts and channeling inner superheroes, mothering Silence documents a brutally honest truth of the trials and tribulations of motherhood.

(The toughest hood)

Here you’ll find my weekly ramblings of the rollercoaster life of motherhood.

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