On Sat 28 Nov, [log in to unmask] wrote:
> 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
>
>
Hi Janet
Many thanks for your reply
I completely agree. For myself, I dribbling is mild
and only wear a bib at mealtimes (plastic) or a cloth bib if
working on computer (if I remember).
I do get concerned about parents and docters role in 'corrective
surgery'. I do agree the parents are not given enough information
to make decisions. Likely my mum give me the choice.
By the way, I am in my first term also but been working/living in
disability for 24 years (My age). I have cerebral palsy.
Simon Stevens
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
|