Living with Erb’s Palsy

Aw hiya.

Some of you may know that I suffer from a condition called Erb’s Palsy. And if you didn’t know? Panic not! I will happily elaborate.

I’m writing this blog as it is Erb’s Palsy Awareness Week and I thought I should  maybe do my bit to help people learn about the condition as I bet you’d never heard of it before. A good lot of medical professionals don’t know about it either. I’ll still never forget a lady living on the same street as my mum saying to me as a child, “There’s no such thing as Erb’s Palsy.”

So! Here’s my wee story. It’s not all doom and gloom! I mean, I’m still alive and such!

Let’s rewind to 19 August 1990. Little baby Nicola attempts to enter the world but gets stuck.

And I mean stuck. Wedged in. I was not for moving. My head and left shoulder came out and that was it. Contractions stopped. This was not good. I wasn’t even a big baby so don’t go calling me a fat child eh?

Cue panic stations and a flurry of doctors and nurses flocking to my mum to save my wee life. A genius doctor decided my mum could push me out without the help of forceps. Who knows, I may have avoided Erb’s Palsy if this gent gave my mum and I a bit of help. Unfortunately, my mum couldn’t get me out and I got stuck. Then in comes someone who pulls me by the neck to get me out before I die and I’m whisked away to a wee baby resuscitation unit to bring me back round.

I made it, don’t you worry. But things were not right.

My left arm was completely paralysed. I had absolutely no movement in my left arm from my shoulder right down to my fingertips.

I’m then seen by a specialist within my first 24 hours of life for my mum to be told I have suffered a Brachial Plexus injury which has caused Erb’s Palsy. My mum was told I will never have a fully functioning left arm.

This specialist then tells my mum that she can learn more about my condition by going to the Mitchell Library in Glasgow as they’ll have more information. What? My mum with a 14 month old and a new born has time to toddle to the library and read books about broken babies? No. So my mum fights for me and gets me 6-monthly appointments with the specialist.

During this time, my mum performs physio on me she was taught at the hospital. Bear in mind here I’m a baby and she’s terrified she’s going to break me.

My mum has to take my tiny arm, bend it at the elbow, pushing the back of my hand towards my shoulder onto a flat surface and splay out my tiny fingers. How fun that must’ve been for her eh? Bending a baby’s arm back whilst I scream at her. Lucky for me I don’t remember any of it. Unlucky for my mum, she remembers it all. She also feels guilty thinking that if she had done more I may have recovered more. I think my mum is an absolute hero and because of her I gained movement in my arm.

Several years down the line, this specialist team expands as there is more interest in Erb’s Palsy and more people want to get involved in helping us kids.

I undergo regular painful X-Rays, infuriating exercises and painful physio. There was always talk of surgery to help my arm by cutting a muscle in my shoulder but I was a ‘borderline’ case. The specialist then says he no longer needs to see me as I’m as good as I’m going to get. My mum says no and takes me back to see him as she thinks I’m getting worse. I told you she was a hero.

Then there’s talk of surgery for real. My mum and dad prepare themselves for nothing. The specialist says no and we’re back to where we started.

Cue my mum taking me to Leeds for a second assessment and another specialist ready to perform the muscle cutting surgery called a ‘shoulder release.’ My specialist at home says no as this is a young surgeon who just wants to practice more surgery and is keen to get his hands on a scalpel. We’re back to square one.

My arm never improves. I cannot turn my palm to face the ceiling and my elbow doesn’t fully extend. If I raise my left arm for long enough my left hand goes numb. When I raise my left hand to my mouth, my elbow sticks out at a right angle and it’s becoming more difficult to eat without taking someone out with my elbow. I have pain in my back too which regularly holds me back in PE and exercise.

I go on yearly appointments at Yorkhill hospital undergoing regular X-rays and failed physio. I’m offered surgery in the form of an osteotomy every appointment but I say no as it will interrupt my exams at school and I play drums for Higher Music. Hello? Playing drums for an exam with one arm? Not so much.

Fast forward another few years. There’s now an adult clinic at the Victoria Infirmary so I no longer have to be the oldest kid on the block at Yorkhill. It’s April 2009 and I’m 18 years old. I’ve completed two years at college and I start university in September. I’m offered the surgery once more and this time I say yes. My mum and I discuss it and we feel it’s best to get it done before I start university. I have my pre-op assessment in May 2009 and surgery is set for 23 June 2009. It’s real. However, if I go for the surgery I will no longer be able to raise my left arm up my back. But if I don’t go for surgery, I’ll still have to suffer the way I’ve been suffering for close to 19 years. The positives outweighed the negatives and I went ahead with the surgery. Eek!

I am on the operating table for a total of 4 and a half hours. My left humerus bone (the big one at the top of your arm, between your shoulder and elbow) is broken and turned 30 degrees outwards in order to give my forearm a more natural movement and relieve the pain in my back. The new bone position is fixed with a metal plate which will live inside my arm for the rest of my life. I’m bandaged up, spend a night in hospital and I’m off home in a sling.

This is 2 weeks after my surgery. My bone is healing and you can see the metal plate keeping my arm together

This is 2 weeks after my surgery. My bone is healing and you can see the metal plate keeping my arm together

This sling stays with me for 2  months and the changes are incredible. I can now tie my hair up in a ponytail without having to throw my hand up to meet my head with only the help of momentum. I can raise my hand to my mouth and my elbow remains by my side. I can turn my palm to face the ceiling without pain or discomfort and the pain in my back has subsided.

This is me rocking a sling on a night out. No stopping me!

This is me rocking a sling on a night out. No stopping me!

There are some downsides though. I can no longer scratch my back with my left hand. That seems ok, but imagine you’re lying down about to sleep and you have to sit up every time you want to scratch your back with your right hand and only with your right hand. It gets old. I sustained a small amount of nerve damage and my thumb has never fully regained 100% feeling. I’m also left with a large scar on my left arm, but I’ll be honest with you. I love my scar.

This is my scar on my left arm around 2 weeks after surgery.

This is my scar on my left arm around 2 weeks after surgery.

I’m now 24 years old and I still have yearly check ups at the Victoria Infirmary and I’m doing fine.

I will never ever be able to do yoga, I can’t do a crab and my elbow still isn’t fully straight and I have very little shoulder definition but hey, I’m alive!

I’m sorry if this post was a bit dull and boring but it’s something I’ve dealt with every day of my life and I will have to deal with it every day of my life.

If you’d like to learn more about the condition then visit The Erb’s Palsy Group who were an incredible help to my mum when I was younger when the specialists weren’t as helpful.

So yeah! There you go! Happy Erb’s Palsy Awareness Week!

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9 thoughts on “Living with Erb’s Palsy

  1. Bronwyn Gunn says:

    Great writing 🙂 I’m always looking for stories from adults with erbs so I can have some sort of idea how to be a better mum for my 5 year old son who has it. You seem like a great positive person, thank you 🙂 xo

    Like

  2. Heather says:

    Thanks for sharing your story. I am 42 and have been living with Erb’s since birth. I do have some use of my right arm, but I too will never do yoga or hold a plank, no matter how hard I try. I also rely on momentum to get my right arm up to my head, I am so happy for you that the surgery was successful! I wish you continued sucess and health! 🙂

    Like

  3. john Phillips says:

    hey
    am an 18 year old person with erb’s palsy
    your writing is wonderful. I felt like reading my own story
    how can I contact you to know more from you

    Like

  4. Senga Mcinally says:

    My son has right erbs and like you he is borderline
    . He is nearly 18 and after much discussion he did not want to go down the road of surgery.
    He is unable to straighten his arm but he compromises and gets there. He got A in his cookery and loves it. Thank you for sharing.xx

    Like

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