[tri-med] Re: [tri-mosaic] Info Needed for Surgery

----- Original Message -----
From: "James Waite"
>>Curiosity has me asking this question, how
> is this procedure different in the eyes of the drs than any other medical
> procedure that Kandice isn't able to consent for? Is it the reproductive
> rights issue?

Its mainly a case of "the rights of the disabled", that they have the same 
rights as everyone else to love, live independently and
have children if they wish. Theoretically, if they wish to have children 
society should put in the supports to allow them to -
sounds good in theory but not so easy to do in practice.
But then there are additional issues - that it is surgery for the convenience 
of the parents. i.e. so that they dont have to deal
with the hygiene aspects. That it is done as a means of birth control - parents 
get it done to "stop" abuse, but in fact it makes no
difference and if anything allows abuse to occur more easily. Some claim that 
parents only do it so that they dont have to raise the
children, which in many cases is what happens when the child cannot parent.
Proponents against hysterectomies say that there are alternatives. The birth 
control pill, customised hormones, uterine ablation and
so on.
Its a VERY emotive issue, and I have stirred up many a discussion on the 
Choices listserv over the issue :-))) ANd how I love a good
friendly "debate". No subject is more sure to get disability rights activists 
going than this one!! Which is why I prefaced my
forwarded message the way I did - not to discourage folk, but rather to head of 
any thoughts of being radical one way or
another............

Its easy to stir up discussion because here in Australia there was a very 
publicised case, must have been back in the late 80's
where the Department of Community Services ( your Children's Services 
equivalent) took a family to court to stop them getting a
hysterectomy for their daughter. It became a long, drawn out and much 
publicised case, which in itself was very sad as I knew the
family and the young lady concerned. I also knew the worker who initiated the 
legal action.

As a result all hysterectomies for our kids became illegal. To obtain that sort 
of surgery they set in place procedures so that you
had to apply through the guardianship board. There a single doctor, lawyers, 
and other people far removed from the child would make
the decision as to whether it could happen.
Technically any of us, disability or not, who decide to have a hysterectomy etc 
could be sent before this board.

Sounds good in theory but there was a follow up study recently that showed 
while the guardianship board had approved some, if not
most hysterectomies applied for, but the number actually done far exceeded the 
"approvals". How? Well they are still done, even if
they are technically illegal.

I even knew one family who sedated their daughter for a plane trip to India 
just so that they could have the hysterectomy done
there. Sad when laws force parents to make those choices.

Personally I am not a fan of depo-provera. I studied at a time when the first 
trials of depo were done, unethically I might add
(they were offered "free" to aborigines in the Northern Territory) - and I 
wasn't impressed by what I read. I also had a dear friend
who was a missionary with these folk and her reports were not good also.

I do believe in a good gyne-endo work up - even for otherwise healthy women 
with hormone issues. I dont believe regular OB/gyn's
understand enough, and that would be my only advice for Kathey. Even if you do 
get the hysterectomy done, do please still follow up
on the hormone issues that must also be involved for such bleeding to be 
happening. Have they checked for polycystic ovaries??

I dont know of any overt complications specific to T-18. That would be a 
question for Dr Carey. I do wonder given the risks for
heptoblastomas and Wilm's whether our kids are possibly more prone to 
conditions such as polycystic ovaries - but that is pure
speculation.

I personally suffered with severe hormone issues for years. And suffered is an 
understatement. I finally saw a gyne/endo after Alex
was born. He did a thorough and complete workup of all hormones and body 
systems. It took some fiddling (boy it took some fiddling)
but the end result was very much worth it.
For many years a hysterectomy was my only option, but no-one would do it 
because of my age. Had I had it done, it would have
alleviated the physical symptoms/problems but not changed my hormone levels 
which were the real issue. As a result I wouldn't have
seen the physical signs of the problem but I would still have had to deal with 
the mood swings, irritability, memory issues, severe
depression and so on.
Now I am on a customised hormone therapy and life is wonderful again. I only 
wish I had found this batch of specialists 20 years
ago......... as it is I feel that I wasted 20 years of my life because of 
hormones!!!! I can't tell you how many weeks I spent in
bed because my blood loss was so severe and it left me so weak, but that was 
only a part of the issue.......... how I wish I had
known.......

I feel the capacity to care is the thing which gives life its deepest 
significance.
- Pablo Casals

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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