Following the difficult birth of her son Daniel, Debbie Clark set about researching the condition that his birth had left him with.
Following the difficult birth of her son Daniel, Debbie Clark set about researching the condition that his birth had left him with. She went to medical libraries and took out books and looked for Erb’s Palsy the book said “look under Brachial Plexus Palsy” so she duly looked up Brachial Plexus Palsy and it said “see Erb’s Palsy”.
Debbie was a stubborn woman and refused to accept that this was all she would be able to glean about Daniel’s condition.
She discovered the umbrella organisation Contact a Family and charity which deals specifically with rare and little known conditions. Contact A Family told Debbie that they had one other family registered with them and Debbie made contact.
From this initial contact Debbie went on to discover that treatment was available for Daniels paralysed arm and through her determination she obtained an appointment for Daniel at a specialist hospital in London. While she was there Debbie met about 6 other families all of whom were in the same situation as her. They had all suffered difficult deliveries and their babies had all suffered an Erb’s Palsy as a result of the delivery. The six families got together and formed the small informal group, which has today grown to be a National Charity.
Our group currently has 1088 families registered as members, all of whom have a child affected by Erb’s Palsy; in fact several families have two children affected by Erb’s Palsy. We have been a registered charity for over 12 years now and we aim to support families in whatever way the family deems suitable, we are user led and aim to help people through the maze of life with a disabled child.
For many families, speaking to someone in our group will be the first time they have had an opportunity to talk through their labour and birth and to share their fears, worries and misgivings with someone who truly understands how they feel. Whilst out primary aim when we started the group was to help children, increasingly we find that our services are called upon to help Mums to begin to come to terms with what happened and to try and alleviate their feelings of guilt.
A large number of Mums who contact our group feel that their child has been injured because of something they did or didn’t do properly during the delivery and often these fears are completely unfounded. We welcome the fact that we now have a dedicated service such as the Birth Trauma Association to whom we can refer Mums for whom the trauma of the delivery will not go away.
The birth of a child who suffers an Erb’s Palsy has a long lasting effect, not only do parents have to deal with a lifelong disability, but the implications for having another child after the injured one, can bring great worry and distress to Mothers. The decision about what type of delivery to have following one where a baby has been injured is one that causes our Mothers a great deal of heart searching and worry. We often find ourselves talking to Mums about subsequent pregnancies and offering advice on how to approach the topic with their caregivers.
Our work is still ongoing, our primary objectives of educating the public at large about the condition and it’s incidence rate is still as important to us today as it was 12 years ago – it’s a large rock, but we keep chipping away at it! We are still working with Midwives on our training programmes to teach them more about Erb’s Palsy and it’s life long effects.
Our primary goal of helping children is one that we will never give up, we are delighted to offer families advice on treatments available, on benefits they can claim and on coping strategies to help their child reach it’s full potential.
We are delighted to be able to work alongside the Birth Trauma Association and feel that between us, we can really make a difference.
Erb’s Palsy Group
Tel: 024 7641 3293