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Subject:
From:
Linda Macaulay <[log in to unmask]>
Reply To:
Cerebral Palsy List <[log in to unmask]>
Date:
Tue, 14 Nov 2006 10:47:10 -0500
Content-Type:
text/plain
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This article has my jaw dropped wide open....I don't see how any board of 
ethics would allow something like this!  Our world really is becoming a 
messed up place.  Books like "Brave New World" and the more recent "The 
Giver" come to mind...

Linda
----- Original Message ----- 
From: "ken barber" <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
To: <[log in to unmask]>
Sent: Saturday, November 11, 2006 11:18 PM
Subject: Re: [berkeley-disabled] Article: Should severely disabled kids be 
kept small?


> thats long gone in todays society.
> --- Susan Moskowitz <[log in to unmask]>
> wrote:
>
>>     Medically Induced dwarfism based on parental
>> fear and inconvenience?
>> Whatever happened to the medical/ethical premise of
>> "first do no harm'?
>> Susan
>> ----- Original Message -----
>> From: "Pam Dahl" <[log in to unmask]>
>> To: <[log in to unmask]>
>> Sent: Friday, November 10, 2006 11:11 PM
>> Subject: Fw: [berkeley-disabled] Article: Should
>> severely disabled kids be
>> kept small?
>>
>>
>> > MSNBC.com
>> >
>> > Should severely disabled kids be kept small?
>> > 6-year-old given hormones to stunt growth so
>> parents can care for her
>> > Reuters
>> >
>> > Updated: 3:23 p.m. AKT Nov 1, 2006
>> >
>> > NEW YORK - In a report published in a medical
>> journal this month, two
>> > doctors describe a 6-year-old girl with profound,
>> irreversible =
>> > developmental
>> > disability who was given high doses of estrogen to
>> permanently halt her
>> > growth so that her parents could continue to care
>> for her at home.
>> >
>> > The controversial growth-attenuation treatment,
>> which included =
>> > hysterectomy,
>> > was requested by the child's parents and initiated
>> after careful
>> > consultation and review by an ethics committee.
>> >
>> > In their report in the Archives of Pediatrics and
>> Adolescent Medicine, =
>> > Drs.
>> > Daniel F. Gunther and Douglas S. Diekema, both at
>> the University of
>> > Washington in Seattle, explain the reasoning
>> behind what they hope will
>> > generate a healthy debate. Gunther is at the
>> Division of Pediatric
>> > Endocrinology, and Diekema is at the Center for
>> Pediatric Bioethics.
>> >
>> > Caring for children with profound developmental
>> disabilities can be
>> > difficult and demanding, they note. For children
>> with severe combined
>> > neurologic and cognitive impairment who are unable
>> to move without
>> > assistance, all the necessities of life <
>> dressing, bathing, =
>> > transporting <
>> > must be provided by caregivers, usually parents,
>> and these tasks become
>> > increasing difficult, if not impossible, as the
>> child increases in size.
>> >
>> > "Achieving permanent growth attenuation while the
>> child is still young =
>> > and
>> > of manageable size would remove one of the major
>> obstacles to family =
>> > care
>> > and might extend the time that parents with the
>> ability, resources, and
>> > inclination to care for their child at home might
>> be able to do so," =
>> > Gunther
>> > and Diekema write.
>> >
>> > The parents of the 6-year-old, both of whom were
>> college-educated
>> > professionals, indicated a strong desire to
>> continue caring for their
>> > daughter. Despite having the neurologic
>> development no greater than that =
>> > of
>> > an infant, the 6-year-old responds to her parents
>> and two healthy =
>> > siblings <
>> > vocalizing and smiling in response to care and
>> affection < and "clearly =
>> > is
>> > an integral, and much loved, member of the
>> family," the authors note.
>> >
>> > After extensive evaluation, the combined opinion
>> of a team of =
>> > specialists is
>> > that the child will have no significant neurologic
>> or cognitive
>> > improvements.
>> >
>> > The onset of puberty and continued growth caused
>> concern in the parents
>> > about how they would care for their daughter
>> long-term, which they =
>> > clearly
>> > wanted to do. They were concerned about having to
>> turn over care to
>> > "strangers" and also about the complications that
>> would arise when the =
>> > child
>> > started menstruating.
>> >
>> > The child is now a little more than a year into
>> growth-attenuating =
>> > therapy
>> > and approaching the end of her growth, Gunther and
>> Diekema report. "As =
>> > of
>> > yet, there have been no treatment complications."
>> >
>> > The authors feel that growth arresting therapy can
>> be "both ethical and
>> > feasible and should be an option available to
>> parents."
>> >
>> > The authors of a commentary applaud Gunther and
>> Diekema for publishing =
>> > this
>> > case report, although they believe that attempts
>> to attenuate growth are
>> > "ill advised."
>> >
>> > Nonetheless, Dr. Jeffrey P. Brosco from the
>> University of Miami and Dr.
>> > Chris Feudtner from the University of
>> Pennsylvania, Philadelphia, say =
>> > that
>> > by beginning the debate, this paper helps to
>> "advance our ethical =
>> > dialogue
>> > as we struggle to define our core values in words,
>> laws, and deeds. Only
>> > with further research and public discussion will
>> we learn whether =
>> > attempts
>> > to attenuate growth run with or against our
>> fundamental values in caring =
>> > for
>> > children with profound developmental
>> disabilities."
>> >
>> > Copyright 2006 Reuters Limited. All rights
>> reserved. Republication or
>> > redistribution of Reuters content is expressly
>> prohibited without the =
>> > prior
>> > written consent of Reuters.(c) Reuters 2006. All
>> rights reserved.
>> > Republication or redistribution of Reuters
>> content, including by =
>> > caching,
>> > framing or similar means, is expressly prohibited
>> without the prior =
>> > written
>> > consent of Reuters. Reuters and the Reuters sphere
>> logo are registered
>> > trademarks and trademarks of the Reuters group of
>> companies around the
>> > world.
>> >
>> > URL: http://msnbc.msn.com/id/15517226/from/ET/
>> > <http://msnbc.msn.com/id/15517226/from/ET/>
>> >
>> >
>> >
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