Hi there Simon,
Thanks for the comments, I was definitely only thinking about severe
situations, and certainly even the children I know of have never been
considered for any kind of surgery. There has been an occasion where
patches were tried on the skin to reduce the problem, as the child in
question was struggling to cope with both breathing and swallowing too,
but even this did not prove to be helpful as it merely clogged everthing
up and distressed the child even more.
So I wouldn't really feel that such surgery was acceptable, except
perhaps in a situation like I have described. This was not, of course,
the situation for the family in the film (sorry, ITV not BBC as I
mentioned) so it does make it very uncomfortable doesn't it?
For one family I know of, the biggest problem has been at night, when
the child lays in a pool of wet. Trying to get health to provide
suitable covering which helped to prevent the skin being wet was very
difficult and it is only the expert care of the parent which was able to
prevent the child's skin from becoming very sore, until it was finally
agreed that special 'sheets' could be made available (decision not to
supply was made on the basis of cost, and the parent only found out
about these sheets from another parent who had been able to purchase one
and found it sorted out the problem - not a cheap option though).
Bibs are also used and not discouraged where I work, and as far as I
know parents are fine with that too - its 'other people' that are the
problem. As for choice, yes, I agree that people should have choice,
but when it comes to children, I do wonder how they are able to make an
informed choice if they are very young, and I do think parents are very
vulnerable (as Gill points out).
I had a baby daughter born with spina bifida many years ago, who sadly
died very quickly. I was given no chance to decide one way or the other
about operations etc, but I think it would have been a very difficult
decision as a parent, and you are so much in the hands of the doctors -
how are you supposed to decide sometimes whats best if you don't have
all the facts?
Gill's other comments were also ones that I felt I agreed with. People
should always be valued for themselves, and we need to celebrate
difference, not try to change people for cosmetic reasons (although
there are some people who seem to want to have "bits" taken out or "put
in" for reasons of vanity - I do wonder how they can cope with the whole
horror of operations etc. - not something I would want to do unless
absolutely necessary medically!)
Well, hope my comments were OK - as I was a bit unsure about writing in
as I am only in the first term of the course, and not sure that I know
enough to participate on this list yet!
Janet Iles
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