Every October the Erb's Palsy Group raises awareness about Erb's Palsy through an awareness week. Through social media, events and fundraising they aim to increase peoples knowledge of Erb's Palsy, and provide information and support to those affected.
This year we look into some powerful case studies of those affected by Erb’s Palsy, how it has impacted both their own life as well as their families, and how their stories can help inform and support others.
Could you tell us about Erb’s Palsy?
My son has quite a severe Brachial Plexus Injury. He has a rupture of C 5, 6 and 7. He was born through quite a difficult delivery. It was a shoulder dystocia delivery where his shoulders were stuck for quite a prolonged length of time. He was obviously born by them trying to do lots of manoeuvres for the shorter distortion protocol and eventually he was freed with some excess force, which obviously caused the injury. He had stressed operation at 11 weeks old and had a nerve graft where they took nerve grafts out of both of his legs and out of the affected arm, and grafted them in to try and established some movement in the arm. He had to have his collar bone broken and to retrieve the scar tissue, and he had a half a larger cut than normal on his neck due to the severity of the injury. At the age of three he had a gracilis muscle transfer which they did try and create a working bicep, that was partially successful. He does have some elbow bend now, but not quite enough to reach his mouth. Without both of these operations and he would have a fully paralysed arm. He now has quite good shoulder movements, partial elbow movement, but his hand is still very poor. He cannot flex his fingers, and his hand is permanently in a fist. There's not much they can do for that, being such a severe injury, so that'll always be a very poor aspect of his arm.
Could you tell us how it has impacted your life?
It affected me quite a lot, especially through the first year. I was diagnosed with PTSD and anxiety. I was also injured physically so I struggled to care for him during the first few months of his life. It was very, very difficult to manage my health along with the numerous appointments that he had. Physio, orthopaedics and the nerves specialists in Leeds. As a baby, my son couldn't play with toys like other small children can. He did hit all his milestones despite these difficulties, although he did actually break his elbow trying to crawl. We've had numerous hospital visits to A&E because he has a lot of difficulties with balance due to his arm and he can’t save himself when he falls over. So we’ve had we had a broken collar bone, we've had head glued, amongst other things. He's had numerous splints as his wrist is in the wrong position and that causes him quite a lot of pain. He has specialist equipment in school and at home which had been put in place by occupational therapists to make things easier for him. Despite all this, my son does amazingly well. He can climb one handed like a little monkey, he can dress independently and do all the things at school that I was worried about like carry his dinner tray.
What do you wish the public knew about Erb’s Palsy and those affected by it?
I wish that it was discussed at birth as a risk factor when mothers decide on options for delivering babies who may be at increased risk of shorter distortion. I wish that the public knew the people that are affected by it, the struggles that they have on a daily basis with things that most of us would take for granted, and just the sheer amount of work that they put in to adapt in life is pretty incredible.
Why did you decide to bring a legal claim, and what advice would you give to others who are thinking of bringing a claim?
We decided to bring a claim ultimately because we wanted an apology. We wanted somebody to say I'm sorry for hurting your son and to take responsibility for that in the hope that the hospital would look at training. To look at pathways to avoid it happening again to somebody else. I would say that the legal claim can be stressful at times, but to listen and to be guided by Tozers has been fantastic and helped us through all parts of the legal claim, and have been very supportive. I also think it's really important and worth mentioning to go to the solicitor who specialises in Erb’s Palsy. They don't have to be local, I'm at the other end of the country to Tozers, but experience is key for a successful outcome.
How has the Erb’s Palsy community helped you?
They have helped us so much, from daily support on things like tips on getting dressed, aspect of daily living, and adaptive aids, to what to expect at operations and support through operations. It's been amazing. The fun day as well the charity put on, when you get the chance to meet other families with similar experiences, and I think that's very helpful. I think it's sort of like the community is one little family and the support from the charity from the other group members has been invaluable.
Is there any advice you would give to the families of those with Erb’s Palsy?
I would say to try and not let it get in the way of enjoying your child and your baby. Easier said than done, especially if it's difficult in the beginning, but to see the child, not the disability, is very important and something that I wish had learned earlier on. To be able to of enjoyed the earlier years. I would also advise people to sign up to the charity, become a member. The support and advice that you get is amazing and something that you wouldn't get elsewhere.
To raise awareness of this condition and to support the Erb’s Palsy Group we are running a series of articles and videos sharing the stories of some of those impacted by Erb' Palsy, to raise awareness of this condition. To see all these case studies please visit our Erb's Palsy Awareness Week page.
We have over 25 years’ experience in bringing clinical negligence claims for compensation on behalf of Claimant’s with Erb’s Palsy. We have developed a wealth of knowledge in relation to this condition.