[tri-med] Re: trisomy euthanasia

" 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

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