Kristina and Ken,

They sure as He** are.  What happened in Kristina's case should not
have happened without her full knowledge.  This makes the "layering"
of the ethical issues even more fascinating.  Kristina, I'm sorry that
the doctors in your daughters case let you down.  Did they talk to you
about "informed consent" before your daughter was delivered?  If you
were at more than 20 weeks into the pregnancy when she was born, they
should have made it clear that a D and C wasn't an option in any case.

I certainly didn't mean to imply that you don't care for your
daughter.  It sounds like you have done remarkably well in an
extremely difficult situation.

As far as caring for her when you are gone, that is an issue that has
been problematic for many people.  There are many states that have
very good programs to care for people with disabilities as severe as
your daughters. I'd get in touch with the Governors Planning Council
on Developmental Disabilities in your state, or the University Center
of Excellence in Developmental Disabilities to find out what's
available.  Here's a link to the National Association of Governors
Councils on DD, and the Association of University Centers on
Disability.  If you'd like to send me (off-list) info on where you
are, I can help you find information and contacts.  Another thing you
might want to consider for when you are gone is a gaurdian for your
daughter.  That can help prevent some of the abuses that have
happened, although there is no 100% guarantee.

www.nacdd.org

www.aucd.org

As far as being "kept alive by machines," my family was faced with
that decision 25 years ago with my grandfather, after open heart
surgery, and my Grandmother, my Dad and My Aunt mad the decision to
disconnect the life support systems.  Another aunt was uncomfortable
with the decision, but agreed.  All the grandchildren were in their
20's at the time, and we all supported the decision, as Granddad would
not have wanted to "live" that way.


On Sat, Mar 15, 2008 at 4:06 PM, ken barber <[log in to unmask]> wrote:
> Kendall, your dad was a doctor, are the not suppose to
>  explain and have the patient sign off on procedures
>  before they do them?
>
>
>
>  --- [log in to unmask] wrote:
>
>  > You may use my name Kendall.
>  >
>  > As to the don't care and stuff.... Here are a few
>  > things I think you missed
>  > in the tone of what I wrote.
>  >
>  > I wanted my child.... I know know about the pill and
>  > was 27 years old... she
>  > was planed.... not the question.
>  > The doctors NEVER mentioned that they could and
>  > would 'save' her.  I thought
>  > they were doing a DNC to save my life.  I told my
>  > mother we would have to try
>  > again next year for a baby... and told her on the
>  > phone because they had told
>  > my family I was being watch and the doctors would do
>  > nothing right away... but
>  > then 1 hours later they said off to the OR.
>  >
>  > I have had disabilied friends all my life... blind,
>  > deaf, no legs and  my
>  > mother had a stroke 14 years before the birth of my
>  > daughter.  My mother and I
>  > had many talks about my mother stroke risk and
>  > quality of life issues.  My
>  > family beleives in no tube or machine to extend
>  > life.  Laying in a bed and looking
>  > at the ceiling is not life to us.... just us.  We
>  > make no choices for other.
>  > I am just saying that prople should be the one to
>  > make choices for thier selfs
>  > and families.
>  >
>  > I was never ask about putting my child on a
>  > ventilator, on experimental
>  > equipment, on giving her blood, or doing a spinal
>  > tap.  The doctors she had when
>  > she was first born only wanted the money.  They said
>  > when they were done "take
>  > her home or give her to the state".  They did not
>  > care what kind of life she
>  > would have.She has CP, mental delays, and a feeding
>  > tube.
>  >
>  > I care very much for her.  When we changed hospitals
>  > and were finally told
>  > her mostlikely outcome... they said she would die a
>  > slow death.  She would
>  > suffocate over a few days and would casp for her
>  > last few breaths.  They said she
>  > would only know tubes and needles to keep her alive.
>  >  Hoe could ANY human with
>  > a soul WISH that on another human.  I as a mother
>  > could not.
>  > BUT we have betten the odds.... we got her home...on
>  > a ventilator until she
>  > was 2 years old.  Now she is 12 and has CP...and is
>  > mental delayed... NO it is
>  > not the end of the world and yes I love her.  BUT
>  > who will take care of her
>  > when I am gone?  Who will change her diaper like it
>  > should be, who will give her
>  > a bath ever day, who will brush her hair, who will
>  > clip her nails.  Will she
>  > be one of those un-lucky ones in a care home that
>  > gets raped or hurt on a
>  > regular basis?  Remember the news coverd a story a
>  > few months back where some man
>  > had raped up to 40 women in homes.  I do not want
>  > this for my child.  I will
>  > not kill her nor let her get sick... she has done
>  > better they thought she would
>  > do because of us (her family) and our hard work.
>  > But I am an only child...
>  > so when I am gone and my dad is gone she will have
>  > to be in a home.
>  >
>  >  I know of kids that are 3 and 4 years old and have
>  > never left the hospital
>  > nor been off of machines... this can be the life of
>  > some premature infants.  To
>  > me this is just doctor greed.... not saving a life.
>  > If you believe if
>  > GOD.... he deicded the life was to end but then man
>  > or the devil in man made people
>  > intervein and 'save' these kids.
>  >
>  > If it was your older family member...they had a
>  > massive stroke and would
>  > never walk, talk, of leave the hospital again....
>  > would you tell the doctors to
>  > put them on machines and tubes?  I have a living
>  > will not to be on machines and
>  > tube.. for myself but was not ask for my child.
>  >
>  > I love her and take good care of her..... but I wish
>  > someone had ask before
>  > shoving machines in her.
>  > Kristina
>  >
>  >
>  >
>  > **************It's Tax Time! Get tips, forms, and
>  > advice on AOL Money &
>  > Finance.
>  > (http://money.aol.com/tax?NCID=aolprf00030000000001)
>  >
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-- 


Kendall

An unreasonable man (but my wife says that's redundant!)

The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all
progress depends on the unreasonable man.

-George Bernard Shaw 1856-1950

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