The Erb’s Palsy Group
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.
Karen Hillyer
Chairperson
Erb’s Palsy Group
Tel: 024 7641 3293
E-mail: info@erbspalsygroup.com
www.erbspalsygroup.co.uk
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