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.
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> 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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