[tri-med] Re: trisomy euthanasia

Wonderful post!!!  What bothers me the most, is that a trisomy child is
considered "disposable" because they don't have a long life expectancy.
Well, you know what??  NONE OF US have any guarantees as to what our life
expectancy may be!  There are, sadly, "normal" children and "normal"
teenagers and "normal" adults who die early due to diseases, accidents,
cancers, etc..  ALL of us are going to die, every single one of us, and none
of us knows when or how.
This is just my opinion, but judging whether to perform surgery when someone
is suffering is one thing, but to refuse surgery based on possible life
expectancy is another.  They often don't really know the trisomy child's
life expectancy just as they don't really know what their own life
expectancy is!  Any of us can be gone at any time!

Irene
Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
6/23/05)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith

On 2/26/06, Meierlaw <meierlaw@xxxxxxxxxxxx> wrote:
>
> " Why perform life-prolonging surgery on a trisomy 13/18 child"
>
> From: "Barbara Farlow" <b_farlow@xxxxxxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent: Wednesday, February 22, 2006 6:44 PM
> Subject: [tri-med] trisomy euthanasia
>
> --------
>
> Many reasons:
>
> 1)  Because all life should be respected.  And some of our trisomy
> children
> can and do live.  Without intervention, we may be allowing children who
> might otherwise be able to live to die without a chance....to die without
> our having the opportunity to learn from them, to receive joy from having
> known them and to be empowered by their grace.
>
> 2)  Many medical professionals say "why bother when the outcome is already
> fixed?"  Well, we say - BECAUSE SHE'S NOT DEAD YET AND BECAUSE SHE MIGHT
> LIVE!  Why shouldn't she have a better quality of life through medical
> intervention while she is living? Someone else's chromosomally normal
> child
> might get hit by a car and die tomorrow or come down with childhood cancer
> or something, but we don't deny them everything they need in anticipation
> of
> their living before any unforeseen malady occurs.  The truth is that we
> don't know for sure the outcome is fixed.  And let me tell you, having
> just
> lost a child at three days of age - whose outcome was fixed because her
> heart was so bad that only a heart transplant could have saved her - it
> doesn't matter.  Regan's life still had great value and we gained much
> from
> having known her.  Every minute we gained from the medical intervention
> she
> did receive was a gift.
>
> 3)  When my 2nd trisomy 18 daughter (the newborn who was just buried last
> week) was diagnosed, they repeated the usual "no quality of life" message
> to
> us.  We said, "who are you to judge whether or not she will have any
> quality
> of life?"  Just because they personally are apparently afraid of having or
> caring for a special needs child doesn't mean there won't be any quality
> of
> life.  Who are they to judge that.  How could they possible know.  All
> children, no matter how profoundly retarded, can still give and receive
> love.  Our older trisomy 18 daughter (the one who will be 5 in April) has
> a
> wonderful quality of life.  She has many developmental issues and needs
> care
> 24/7, but she has a wonderful quality of life.  Rachel is a very happy
> little girl and she will never know what it is to have to join the rat
> race - she will never know the kind of difficulty we chromosomally normal
> adults have to deal with every day of our lives.  No, it's the parents of
> special needs children who often have a compromised quality of life trying
> to keep it all together while caring for their special needs child -
> trying
> to get the medical help they need, trying to work and care for their
> child,
> trying to be balanced while caring for their other children when the 18
> needs more attention.....  My husband and I do not travel because of
> Rachel.
> We cannot get much babysitting help because people are afraid of having
> anything happen to Rachel on their watch.  We don't get invited to play
> groups.  Some relatives ignore Rachel at parties.....  Are the medical
> professionals just projecting their own fear and possible selfishness by
> saying that there would be no quality of life because they wouldn't want
> their quality of life compromised?
>
> 4)  Some also like to use the "drain on society" argument.  One doctor
> even
> told us it wasn't worth the money to do any further testing on Regan's
> heart
> to be sure there was nothing to be done.  We tested anyway and, in doing
> so,
> the cardiologist discovered that, indeed, Regan did require an echo
> immediately after birth because he couldn't tell for sure if her aorta
> would
> be able to function or not.  If it had been good, he said she could have
> actually lived years with her heart deformed the way he thought it
> was!  We
> have fought for and gotten every medical intervention for Rachel that we
> could get.  Rachel and Regan both have given so much back to society -
> like
> faith, hope and love - things that money can't buy and things that society
> needs in order to fully live.  It is possible that what they have
> contributed far outweighs in value any money that has ever been invested
> in
> their well-being.  They contribute joy and food for the soul; things that
> money can't buy.
>
> 5)  The three days we just had with our daughter Regan before she died
> were
> some of the most wonderful of our lives.  We wouldn't have traded her for
> anything.  Three days may not seem like much to some people and may not
> seem
> like they are worth all the effort we went through to have her in the
> first
> place or to ensure her well-being in our birth plan, but Regan taught us
> so
> much; especially about the courage and strength it takes to live.  Regan
> showed great courage.  And she brought out the best in us.  We are better
> people for having known her.
>
> She was able to understand and respond when I showed up in the NICU.  The
> nurse pointed out that she would immediately see a difference in Regan
> when
> I arrived and Regan heard my voice.  It was a good thing for Regan and for
> me.  I was able to look into her eyes and receive her love and she could
> look into mine and see that I loved her.  I sang to her, I rocked her, I
> sat
> up all night with her because she didn't feel good, I held her fingers
> wrapped around mine, I changed two diapers, I comforted her, I made
> memories
> with her....  I was able to be a mother to her - my God-given right and
> natural instinct.  If we had euthenized her because we mistakenly thought
> there was nothing of value to her short life, we would have missed so
> much.
> We grieve her loss deeply; how fortunate we were to have had her as long
> as
> we did!
>
> How fortunate we are to have had Rachel for nearly five years now.  She is
> such a joy to us and to everyone who knows her...always ready with a smile
> to brighten your day.
>
> In short, one just has to put their personal fears aside and spend some
> time
> with our kids in order to understand their value and know why they deserve
> life-saving medical intervention.
>
> Aimee in Cincinnati, Ohio  (USA)
> (mother to Rachel (full T-18) 4/18/01, Jillian Yun Ping 6/18/02, Ian
> 7/31/03
> and Regan (full T-18) 2/9/06-2/11/06 ^i^)
> http://users.adelphia.net/~meierlaw/
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>


--

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

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