[tri-med] Re: trisomy euthanasia

Aimee,

This is such a well put together letter, and profoundly moving. 
You've hit the nail of the head, thanks.

At 07:50 AM 27/02/2006, you wrote:
>" Why perform life-prolonging surgery on a trisomy 13/18 child"
>
>
>
>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
>
>
>
>
>--
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Jocelyn, Wife to Frank, Mother to Ian, Gillian and Susan
Grandmother (Nanna)  to Carly 18, Mathew 17, Ashleigh 16, Alex 13 and 
Tess 9 years (T18)
and step-Nanna to Carrie 18.
Living at North Richmond, NSW Australia 

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

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