In support of Erb’s Palsy Awareness Week 2023, Ison Harrison interviewed a mum of two to better understand how their lives have been impacted by the birth injury sustained when her youngest son was born.
By sharing her story, she hopes to raise awareness of the condition and reassure other parents they are not alone.
Here’s what this super mum had to say:
What is Erb’s Palsy and how has it impacted your life?
“Erb’s palsy is the full or partial paralysis of the arm. It is a very rare disability that usually occurs during a difficult birth where larger babies get stuck (shoulder dystocia). It’s where the baby’s head is pulled too hard away from the shoulder causing damage to the 5 nerves under the collarbone. The extent can vary from bruising, to stretching all the way to the nerve being pulled from the spinal cord.
I had signs of shoulder dystocia in my first labour so it was something I was aware of and concerned about the second time. When my second baby became stuck during delivery I asked for a caesarean section, which was agreed but never actioned.
Shortly after his birth I was told he possibly had a broken clavicle, but this was ruled out by an x-ray and I was told he had a brachial plexus injury. Ten days after his birth I received a letter which mentioned Erb’s Palsy. This was a huge shock and something we have been dealing with for the past 7 months.
Erb’s palsy for us has taken away some of the special moments you have after the birth of your baby.
For us, it’s now a part of our everyday life. It’s something that never should have happened, that could have been prevented.
Every day I have to be cautious and assess my son’s arm. I do his physio multiple times a day and we do play therapy. Little things like getting him to use a spoon in that hand or keeping an eye on how his arm is, are part of my daily life. This is something I never had to do with my first son.
I often think about my sons’ futures and I realise that I think about them both so differently. With my first son, I wonder about his future career and if he will get married. With my second son, I think more about whether he will be able to learn how to crawl or how the children and teachers are going to treat him in school. I worry about how I will educate others on my son’s disability, a disability that he never should have had.”
Who are the Erb’s Palsy Group and how do they support families and individuals?
“The Erb’s Palsy Group have been our saving grace. They are a group that educate people on Erb’s Palsy and the pathways that should be taken for a brachial plexus injury. They provide so much love and support to each and every member. For us, they are our first point of call. Karen Hillyer has been the most helpful person we know, she’s talked on the phone for hours helping us out even though she lives miles away and has a lot of people needing support too, she doesn’t stop until everyone has got the help they need. The admins and trustees of the group continuously spread awareness and share their stories, something that helps us all know we are all going through it together.”
How have the Erb’s Palsy Group helped you and your family?
“I found the Erb’s Palsy Group when I was searching to see if I could find other children like mine. I posted an anonymous message on Facebook initially.
The Erb’s Palsy Group guided us to get a referral for my son to the specialist Erb’s Palsy team at Leeds Hospital as well as advising us about what to expect at the appointments. They have sent leaflets and letters to help us better understand and to educate others. They have messaged before appointments, phoned me, voice noted me and simply replied on the posts I put on Facebook with words of wisdom and support. They have given me a range of knowledge that trumps most doctors (except those at Leeds). Karen has met up with me and others at Leeds hospital for moral support as well as inviting us all to events.
Thankfully my son hasn’t required surgery yet, but they can’t rule out the possibility of him requiring it in the future. He requires regular check-ups and the thought of him being assessed is daunting every time. I get panic attacks and anxiety leading up to these appointments.”
What advice would you give to parents of a child that has recently been diagnosed with Erb’s Palsy?
“It’s not your fault!! That’s the main thing. And enjoy every little moment with your little one, something I would have done if I was given the right information and support when he was born. Document everything, you may need this later down the line. And post, phone and message on the Erb’s Palsy Facebook group as much as you want! We are all here to offer support and guidance. Lastly, make sure yourself and your partner talk about it and get some help if needed.”
What can parents do to support their children who have Erb’s Palsy?
“Educate yourself as much as possible, you’re going to be your child’s carer and know them more than anyone so noticing patterns, struggles or even to educate others is going to become a daily thing. Do all the physio and play therapy, it does help massively. Be wary, they don’t have as much feeling in that arm so you’ve got to be checking. My son had infections on his fingers which needed antibiotic cream, which didn’t cause any issue to him but could have been more serious had I not noticed. For schools and nursery, the Erb’s Palsy group has plenty of leaflets to help the transition and things they can do to help.”
If you could offer one piece of advice to a child or young person with Erb’s Palsy what would it be?
“This doesn’t define you, you have already overcome more than most people!”
What do you wish the general public knew about Erb’s Palsy?
“I wish they knew what it was in general but also I wish they knew the physical and psychological impact for those families and how it takes over everyday life. As little as sizing babies up bigger to avoid strain or choosing jackets rather than jumpers. All those clothes you bought that end up unusable. And the trauma it brings, I have PTSD due to this and go to therapy weekly.”
How can people contact the Erb’s Palsy Group?
“Facebook, via the website https://www.erbspalsygroup.org.uk/, via phone (details available on website), Twitter, TikTok, and Instagram.”
