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Chair - Ruth Welsh |
Ruth Welsh :
Chair.
My son Arran was born in 2000 with Poland Syndrome. Like the majority of
parents, Billy and I had no idea that there were any complications with the
pregnancy until after Arran’s birth, in fact even though Arran has quite a
marked hand and arm involvement, the midwife did not spot anything different. It
was after Billy had left to go home (5 am) and I was waiting to go back to the
ward that I ‘unwrapped’ him and noticed his hand. This for me was an extremely
stressful experience on top of a hard labour with hundreds of questions
immediately rushing through my head and no one to answer them.
Arran was diagnosed as having Poland Syndrome by the Plastic Surgeon we were
referred to when Arran was 6 weeks old. It is often the case that those with
hand involvement are fortunate to receive a much earlier diagnosis that than
those without. Once we had a name for Arran’s condition we were able to start,
as many of you will have done, trawling the Web for information and answers to
our questions – how many of us have put out the plea on MSN ‘Is there any one
from the UK out there?’. As a mother, I really needed to speak to some who could
empathise with the experience I had been through, who would understand my
feelings and not give the cliché ‘Well it could have been a lot worse’. At this
stage it is you that is affected most by Poland Syndrome, not the child. I was
very lucky to receive responses to my plea and had some extremely valuable
conversations in the early months of Arran’s life. Hopefully the Group will be
able to provide a similar experience for new parents.
Having found support for myself, my primary motivation in the Group is to
instrument a network of support for Arran and other children. I sincerely hope
that if our children have the opportunity to chat with other kids, and adults
with Poland Syndrome, as they progress through life they will be able to support
each other through some turbulent times ahead. They will not suffer the feelings
of isolation that we read about on the message boards. As parents we can
sympathise, but never empathise.
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